The Marker - 2004 - Huntington's Disease Society of America

marker 

THE 

Huntington’s Disease Society of America 

Milestones in HDSA’s 

Commitment to Care and Cure 

1953 

Watson 

& Crick 

Discover 

DNA 

1967 

Woody 

Guthrie 

Dies 

1993 

HD Gene 

1997 

Coalition 

for the 

Cure 

1998 

Centers of 

Excellence 

2002 

35 Years 

of Care 

and Cure

a message from C HARLES D IMMLER III 

HDSA’s chairman of the board 

Iam very pleased to introduce 

myself as the new Chairman of 

the Board of the Huntington’s 

Disease Society of America. As we 

stand on the brink of a new era in HD 

research, I am inspired by what the future 

holds. I was drawn to HDSA’s mission 

because of the recent stunning pace of 

research and the energy of the HDSA 

organization as a whole. I am eager to be 

part of a movement whose goal it is to 

cure this disease. 

As you’ll read in this issue, the 

HDSA Coalition for the Cure has 

continued to evolve as new research 

opportunities arise to meet the challenges 

and questions that have come out of the 

Coalition’s past successes. The HDSA 

Coalition for the Cure will soon embark 

on a new way to investigate Huntington’s 

Disease while seeking to answer five 

questions that appear to be key to 

developing effective treatments and 

eventually discovering a cure. The new 

Drug Discovery Team will bring tangible 

and measurable outcomes to the valuable 

dollars that HDSA will 

continue to invest in research. 

And with this renewed energy 

is an opportunity to build 

awareness about this disease. 

In recent years, HDSA has 

made significant strides in 

educating the public and our 

government officials about HD. 

Our latest efforts center on redefining 

Huntington’s Disease for the Social 

Security Administration (SSA) which 

manages the Social Security Disability 

Insurance program (better known as 

SSDI). This federal program provides 

essential funds to those Americans who 

are too disabled to continue working. 

HDSA is working with SSA to develop 

a broader definition of HD that may speed 

disability determination for those with 

HD. Please be sure to read about 

our progress on this important issue on 

page 21. 

This year will also bring the designation of 

three new HDSA Centers of Excellence 

for Family Services, thus bringing us one 

step closer to our pledge to 

identify and fund 25 of these 

comprehensive care facilities 

by 2005. Our HDSA Centers 

of Excellence provide not only 

outstanding medical and social 

services for our HD patients 

and their families but they also 

offer a unique opportunity to participate 

in research that will improve the quality 

of life for our families. Please be sure to 

read about the many exciting research 

projects offered by our HDSA Centers of 

Excellence and consider becoming a 

part of one. 

In closing, the next five years will be a 

time of rapid progress and discovery as 

HDSA moves forward on both the care 

and cure fronts of HD. I urge you to be a 

part of it. Join us now, at the threshold, as 

HDSA builds on its past accomplishments, 

to achieve our goals in research, drug 

discovery, and palliative care for 

Huntington’s Disease patients and their 

families. Together we can make this the 

last generation with HD. 

The Marker is an official publication of the 

Huntington’s Disease Society of America, Inc. 

158 West 29th Street, 7th Floor, New York, NY 

10001-5300. (212) 242-1968 

Charles Dimmler III 

Chair of the Board 

Barbara T. Boyle 

National Executive Director/CEO 

Debra Lovecky 

Director of Communications/Editor 

Karen Tarapata 

Editor 

Byne Graphics 

Design 

Rina Miele 

Art Director 

The Marker, a periodical of the Huntington’s 

Disease Society of America, Inc., is published 

twice annually. Its purpose is to provide 

information and opinion and to relay items of 

interest to individuals with Huntington’s Disease 

and their families, health care professionals, and 

interested friends and supporters. 

The appearance of advertising, or the mention of 

commercial products available for sale in articles 

published in this publication, is not an HDSA, 

Inc. guarantee or endorsement of the product or 

the claims made for the product by the 

manufacturer. Statements and opinions expressed 

in articles are not necessarily those of HDSA, Inc. 

HDSA, Inc. is a national not-for-profit 

organization founded in 1986 to help individuals 

with Huntington’s Disease and their families. 

The Society is a member of the National Health 

Council, the National Foundation for Brain 

Research, the International Huntington 

Organization, the National Organization for Rare 

Disorders, the National Voluntary Health 

Agencies, the Alliance of Genetic Support 

Groups and the Independent Sector. 

The Huntington’s Disease Society of America 

meets all nine standards of the National Charities 

Information Bureau. 

©2004 Huntington’s Disease Society of America 

About the front cover: 

From DNA to the Care and Cure of HD

a message from 

B ARBARA B OYLE 

HDSA’S national executive director/ceo 

As our new 

Chairman of the 

Board looks forward 

at opportunities that await us, 

let me take a moment to look 

back at our last 35 years and 

what we have accomplished. 

Our cover is dedicated to milestones in 

HDSA’s history of care and cure. Since 

1967, the organization has grown by leaps 

and bounds while our ability to fund 

research has doubled and doubled again. 

As a result of those critical investments 

in research, we now stand on the brink of 

a new era in research and drug discovery. 

As I talk with our HDSA Coalition for 

the Cure investigators, I can feel the 

excitement in the air and the renewed 

spirit that we will cure this disease.The 

Coalition for the Cure was founded in 

1997, and as the article on page 2 notes, 

many of the milestones in research that 

we now take for granted are only a few 

years old. Indeed, the greatest discovery 

in HD research to date, finding the gene 

that causes HD, 

is only 10 years old! Many 

of you have even met HDSA 

Coalition for the Cure 

investigators, Drs. Jim Gusella 

and Marcy MacDonald, who 

are credited with finding the 

gene in 1993 in their lab in Massachusetts 

General Hospital. That’s an incredible 

milestone in both research and HDSA. 

But even more incredible is how fast the 

pace of research continues to be. 

But as important as the cure is, so too is 

HDSA’s commitment to caring for those 

affected by this devastating disease and 

their families. In 1998, we began the 

HDSA Center of Excellence program and 

very shortly we will have 20 full scale 

major medical facilities dedicated to 

providing the finest medical and social 

services available to our HD families. But 

Centers of Excellence do so much more. 

They serve as hubs for community 

services, referrals and local resources; 

they work directly with local physicians 

to ensure continuity of care between 

visits to the Center; they educate the 

public and healthcare professionals about 

HD and they offer opportunities to 

participate in research and care studies. 

Our HDSA Centers of Excellence work 

in conjunction with HDSA chapters and 

support groups to provide an unparalleled 

network of medical support and services. 

As we move forward in developing our 

care initiatives, I see the development of 

effective therapies for this devastating 

disease and the implementation of a 

“best practice” model for all aspects of 

care for those currently affected by HD. 

I hope that you will accept our 

Chairman’s challenge and join with 

us in this exciting time at HDSA. 

Be a part of the care and cure of HD. 

tableof 

contents 

New Pathways to Discovery ......2 

HDSA Grant and Fellowship 

Recipients ..................................4 

Hoop-A-Thon..............................8 

Research Update ........................9 

Celebration of Hope ................12 

HDSA Centers of Excellence 

Lead the Way............................15 

Caregivers Link ........................20 

Talking Technology ..................23 

HDSA Convention 

is Coming..................................24 

Living at Risk ............................25 

Honoring Rep. Slaughter..........27 

Remembering 

Don King, Ph.D.........................28 

Ways To Give ............................30

HDSA Coalition for the Cure – 

New Pathways to Discovery 

By James Gusella, Ph.D. Chair, HDSA Medical and Scientific Advisory Committee 

An important part of HDSA’s 

mission is to develop an 

effective therapy or a cure for 

Huntington’s Disease. Most advances 

in our understanding of HD and its 

processes have come through basic 

research which aims to gather the 

fundamental knowledge and 

understanding that is needed to develop 

successful treatments for disease. It is 

best conducted in an investigator-driven 

manner, giving the individual scientist 

the freedom to choose what he or she 

thinks are important questions, as well as 

the means to answer them, either 

individually, or cooperatively with 

others who have similar interests and 

technologies. Each answer leads 

inevitably to the next question that 

needs to be addressed, and gradually 

the knowledge critical to developing an 

effective treatment or cure is uncovered. 

The strength of the basic research 

approach is that outcomes cannot be 

predicted and therefore investigations 

can lead in unexpected and very fruitful 

directions. Basic research is the source 

of most of the significant advances in 

science and technology, and the 

knowledge that it provides sets the 

stage for applied research to engineer 

a treatment. Although we have made 

great progress in uncovering the exact 

mechanism through which HD takes 

effect, there is still much to understand. 

It is vital, therefore, that we continue to 

support basic research. 

The flagship research program of HDSA 

is the Coalition for the Cure, which 

began in 1997 as a major new initiative 

to bring together the leading HD 

researchers who had proven to be 

pioneers in the field, and provide them 

with stable funding that would 

1. foster cooperative efforts, 

2. accelerate their ongoing research or 

3. allow them to try high risk new 

directions. 

Early HDSA funded research was decided 

upon by investigators who were deeply 

familiar with the HD problem, and were 

advised by a Steering Committee of 

scientists typically not involved directly 

in HD research but generally familiar 

with the field. Over the last six years, the 

original collaborative group of Coalition 

scientists has been augmented by the 

Basic research is the 

source of most of the 

significant advances in 

science and technology. 

addition of labs new to HD, but selected 

by the Steering Committee as having 

technologies and/or research interests 

that have been deemed important to 

finding answers to the HD puzzle. The 

HDSA Coalition for the Cure currently 

unites 17 laboratories from around the 

world that have committed themselves to 

understanding how the defective HD 

gene causes the ravages of the disease and 

to thereby add to the knowledge 

necessary to cure it. Since its inception, 

the Coalition has been incredibly 

successful, as HDSA Coalition for the 

Cure investigators have been at the 

forefront of the recent fundamental 

advances in HD. 

As we have learned more about HD, the 

questions that still need to be addressed 

have become clearer and individual 

laboratories have each begun working in 

their own way to answer these critical 

questions. Consequently, to take greatest 

advantage of the emerging synergies and 

interactions, HDSA is altering the 

structure of the Coalition for the Cure. 

2

The new organization calls for current working on important problems while 

Coalition investigators to form teams providing the basis for much closer, more 

that will cooperatively address the five frequent and more effective cooperative 

most critical questions in HD research interactions between those laboratories 

today. These questions were determined working in the same areas. This team 

in October 2003 at the annual Coalition structure would not have been possible 

HDSA COALITION FOR THE CURE INVESTIGATORS 

■ 

■ 

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■ 

■ 

■ 

■ 

■ 

■ 

■ 

■ 

■ 

■ 

■ 

■ 

■ 

Gillian Bates, Ph.D., Kings College London (UK) 

M. Flint Beal, M.D., Weill Medical College of Cornell University (NY) 

David Borchelt, Ph.D., Johns Hopkins University (MD) 

Elena Cattaneo, Ph.D., University of Milano (Italy) 

Jang-Ho Cha, M.D., Ph.D., Massachusetts General Hospital (MA) 

Marian DiFiglia, Ph.D., Massachusetts General Hospital (MA) 

Robert Friedlander, M.D., Brigham and Women’s Hospital (MA) 

J. Timothy Greenamyre, M.D., Ph.D., Emory University (GA) 

James F. Gusella, Ph.D., Massachusetts General Hospital (MA) 

Michael Hayden, M.D., Ph.D., University of British Columbia (Canada) 

Steven M. Hersch, M.D., Ph.D., Massachusetts General Hospital (MA) 

Ron Kopito, Ph.D., Stanford University (CA) 

Marcy MacDonald, Ph.D. Massachusetts General Hospital (MA) 

Richard Morimoto, Ph.D., Northwestern University (IL) 

Christopher Ross, M.D., Ph.D., Johns Hopkins University School of Medicine (MD) 

Leslie Thompson, Ph.D., University of California, Irvine (CA) 

Erich Wanker, Ph.D., Max-Delbruck-Center for Molecular Medicine (Germany) 

for the Cure meeting as a result of a freeflowing 

discussion that included all known about the HD mechanism to 

in the past because not enough was 

Coalition investigators and the Steering hone in on a few crucial areas. With 

Committee. Each research team will the individual findings of Coalition 

consist of 4-7 investigators (some labs investigators over the past six years, the 

will be members of 2 teams) and will be Coalition has been able to decide upon 

advised by two expert scientists not five critical areas that will provide the 

working on HD, thus allowing an most useful information for developing a 

independent view of the research area. treatment. As answers to these questions 

The teams will be funded by HDSA are discovered, HDSA will pursue 

based on a single joint grant application partnerships with experts in 

for each team. 

biotechnology to develop effective 

By restructuring the HDSA Coalition for 

treatments for this disease. 

the Cure, HDSA intends to retain the Coalition scientists are excited about this 

benefits of individual laboratories new format and the potential that it 

provides for more focused efforts in the 

areas likely to make the most difference 

to our understanding of HD. For those 

HDSA families and physicians familiar 

with the HDSA Coalition for the Cure, 

the new format is a signal that the 

Coalition has been successful in its 

initial explorations and has adapted to 

take advantage of the new research 

landscape that it has helped to create. 

We expect that the new structure will 

further accelerate the generation of 

knowledge about the HD mechanism 

and will effectively hone in on 

significant targets that can be used 

for therapeutic development. 

THE FIVE QUESTIONS 

IDENTIFIED BY COALITION 

INVESTIGATORS AS THE MOST 

PROMISING FOR HD DRUG 

DISCOVERY AND TREATMENT 

ARE AS FOLLOWS: 

1. What is different about energy 

metabolism and mitochondrial 

function in HD? 

2. How does huntingtin aggregation 

impact Huntington’s Disease 

development and pathogenesis? 

3. What are the post-translational 

modifications that huntingtin 

undergoes and how can 

interruptions of this alter 

pathogenesis? 

4. What are the primary 

signaling pathways through 

which huntingtin acts and what 

is its impact on transcription 

regulation? 

5. What is the role and 

behavior of normal huntingtin 

protein and how does this 

contribute to disease 

prevention? 

3

esearch 

grants & fellowships 

HDSA GRANT AND FELLOWSHIP RECIPIENTS 2003–2004 

Though the HDSA Coalition for the 

Cure serves as the flagship of HDSA’s 

research program, HDSA’s prestigious 

Grant and Fellowship program has 

contributed significantly to advancing 

our knowledge about HD and the 

disease process. 

The Grant and Fellowship program 

provides essential funding to research 

projects in their early stages of 

development. This “seed money” allows 

HDSA Grant recipients to generate 

sufficient data and advance their project 

from a promising hypothesis to a mature 

study that will then be eligible for greater 

funding from larger national agencies 

like the National Institutes of Health 

(NIH) or the National Institute of 

Neurological Disorders and Stroke 

(NINDS). The HDSA Grant program 

provides grants of up to $100,000 

(payable over two years if renewed). 

HDSA Fellowships were created to 

expand the pool of young researchers 

who are interested in studying HD. 

HDSA Fellowship awards can total 

up to $80,000 (payable over two 

years if renewed). 

Therapeutic Initiative awards are special 

grants that fund research projects that 

will develop assays (tests) to look at 

various promising compounds and drugs 

that might yield an effective treatment 

for HD. The HDSA Therapeutic 

Initiative grant program will soon be 

expanded into the HDSA Drug 

Discovery Team – a collaborative that 

will pursue partnerships with industry to 

develop therapeutic remedies for HD. 

New Grants 2003–2004 

Ilya Bezprozvanny, Ph.D. 

University of Texas Southwestern 

Medical Center 

Dallas, TX 

Association of Inositol-(1.4.5) 

Triphosphate Receptor with HAP1 

and Huntingtin Proteins in the Brain: 

Implications for Huntington’s 

Disease 

It appears that huntingtin-associated 

protein-1 (HAP1), which binds with 

huntingtin, interacts with a calciumrelease 

channel, in yeast. Calcium 

gradients affect a cell’s ability to 

produce usable energy and Huntington’s 

Disease seems to be related to this 

misfunction. Dr. Bezprozvanny is thus 

investigating the relationship between 

the calcium channel, HAP1, and 

huntingtin (protein) to determine how 

alterations may contribute to and impair 

Huntington's Disease. 

Pamela J. Bjorkman, Ph.D. 

California Institute of Technology 

Pasadena, CA 

Structural and Binding Studies of 

Mono-, Bi-, and Trivalent Anti-Poly- 

Gln Antibodies Bound to Huntingtin 

Exon1 

Mutant huntingtin protein aggregates 

and forms large clusters within the 

nucleus of HD cells. Dr. Bjorkman is 

investigating the potential to physically 

block this interaction using a variety of 

reagents that are targeted to multiple 

binding sites on mutated huntingtin. 

Janet Dubinsky, Ph.D. 

University of Minnesota 

Minneapolis, MN 

Proteomics of CNS Mitochondria 

Inhibitors of mitochondria, the energy 

factory within a cell, mimic the 

pathology of HD, suggesting 

mitochondrial disorder may contribute 

to Huntington’s Disease. Recently, Dr. 

Dubinsky discovered that mitochondria 

in the striatum, the region of the brain 

most affected in HD, are more at risk of 

disruption. She now examines the 

protein profile for both cortical and 

striatal mitochondria in the hopes of 

identifying a factor unique to striatal 

cells that may provide a target for 

therapeutic treatments. 

Pietro Mazzoni, M.D., Ph.D. 

Columbia University 

New York, NY 

Impairment of Motor Learning as a 

Biologic Marker of Pre-symptomatic 

Huntington’s Disease 

Currently, when patients are diagnosed 

with neurodegeneration, a great deal of 

brain damage has already occurred. 

Better exams, such as those being 

designed by Dr. Mazzoni, are therefore 

necessary so that once neuroprotective 

treatments are discovered, they may be 

administered as early as possible to 

avoid extensive neurodegeneration. 

4

Renewing Grants 

2003–2004 

Yury O. Chernoff, Ph.D. 

Georgia Institute of Technology 

Atlanta, GA 

The Role of Protein-Protein 

Interactions in Cell Toxicity of 

PolyQ Huntingtin in the Yeast 

Model 

James A. Huntington, Ph.D. 

University of Cambridge 

Cambridge, UK 

Structure and Function of 

Huntingtin 

Alyson L. Peel, Ph.D. 

Buck Institute for Aging Research 

Novato, CA 

Activation of Cell Stress Kinase, 

PKR, as a Cell Death Mechanism in 

Huntington's Disease 

Peggy F. Shelbourne, Ph.D. 

University of Glasgow 

Glasgow, Scotland 

Mutation Length and Neuronal 

Function in Early Huntington’s 

Disease Pathogenesis 

Raymond Truant, Ph.D. 

McMaster University 

Hamilton, Ontario, CANADA 

Analysis of Huntingtin Associated 

Proteins in Nuclear Transfer 

New Fellowships 


Martin Duennwald, Ph.D. 

Whitehead Institute for Biomedical 

Research 

Cambridge, MA 

The Role of Protein Degradation in 


Mutant huntingtin is believed to 

disrupt a cell’s ability to destroy 

proteins that are either misfolded or 

are no longer needed by the cell. 

Dr. Duennwald is investigating the 

exact mechanisms by which mutant 

huntingtin has this effect through 

the yeast model (Saccharomyces 

cerevisiae) system. 

Devin S. Gary, Ph.D. 

Johns Hopkins School of Medicine 

Baltimore, MD 

Investigation of RNA Interference 

as a Therapeutic Approach in 


Cells use messenger RNA as 

instructions for how to produce 

proteins that are needed within a cell. 

Dr. Gary is trying to prevent HD cells 

from producing mutant huntingtin 

protein by disrupting these 

instructions. 

New Fellowships 


Kirsten Messmer, Ph.D. 

University of Maryland 

Baltimore, MD 

Degradation of PolyQ Expanded 

Htt by Parkin Complex 

Mutant huntingtin protein can impede 

the cell’s ability to degrade proteins 

and thereby contribute to its own 

buildup and aggregation within an HD 

cell. Parkin is an enzyme that can 

facilitate the elimination of abnormal 

proteins, including mutant huntingtin. 

Dr. Messmer is trying to enhance this 

activity. 

James L. Pearson, Ph.D. 

Duke University Medical Center 

Durham, NC 

Characterization of the Functional 

and Biochemical Significance of the 

Interaction of Huntingtin with the 

Transcription Factor CA150 as it 

Relates to mRNA Expression 

It has been shown that mutant 

huntingtin interacts with and impairs 

the functionality of transcription factor 

CA150. Expression of this molecule, 

which enables other proteins to be 

produced, correlates with HD severity 

in human HD brain tissue, suggesting 

the loss of function of CA150 plays a 

role in the disease. Dr. Pearson is 

specifying the ways in which the 

interaction between CA150 and 

mutant huntingtin impacts the cell. 

Vanessa Wheeler, Ph.D. 

Massachusetts General Hospital 

Boston, MA 

An Investigation into the Role of 

MSH2 in Huntington's Disease 

Pathogenesis 

5

Renewing Fellowships 

2003-2004 

Michael Cyr, Ph.D. 

Duke University 

Durham, NC 

Dopamine System and Its 

Contributing Role in the 

Development of Pathological 

Conditions in Huntington’s Disease 

Lac Djousse, M.D. 

Boston University School of Medicine 

Boston, MA 

A Genome Scan for Genetic 

Modifiers of Huntington’s Disease 

HDSA Therapeutic 

Initiative 

Steven M. Finkbeiner, M.D., Ph.D. 

Gladstone Institute of Neurological 


San Francisco, CA 

PolyQ Conformation-Based Drug 

Screen 

Susan Lindquist, Ph.D. 

Whitehead Institute for Biomedical 

Research 

Boston, MA 

Yeast as a Model System for 

Huntingtin-Mediated Toxicity 

HDSA Therapeutic 

Initiative 

Nancy Muma, Ph.D. 

Loyola University 

Chicago, IL 

Therapeutic Targeting of 

Transglutaminase for Huntington's 


James Gusella, Ph.D. and 

Marcy MacDonald, Ph.D. 

Massachusetts General Hospital 

Charlestown, MA 

PROMPT ASSAY 

Christopher A. Meade, Ph.D. 

University of Tennessee 

Memphis, TN 

Does Cortex Kill Striatum in HD? A 

Study Using in Oculo Co-Implants 

GLOSSARY 

Aggregation: the clumping of proteins in 

cells that interfere with cell functioning; 

aggregation of the huntingtin protein is 

seen in HD. 

Caspase: an enzyme that induces cell 

death (apoptosis). 

Cleavage: the degradation of a large, 

complex molecule into a smaller one; 

cleavage is one example of a posttranscriptional 

modification and can be 

used to alter the activity of a protein. 

CNS (central nervous system): The 

central nervous system is the portion 

of the nervous system that includes the 

brain and the spinal cord. It is through 

this region that the brain sends signals 

to the rest of the body. 

Conformational Changes: when a protein 

changes structure. 

Gene Transcription: before a gene 

becomes a protein, it must go through 

several processes. The first step is 

called gene transcription and it occurs 

when a gene is transcribed into RNA 

using nucleic acids. 

Huntingtin: the protein encoded by 

the gene that carries the HD defect. 

Repeated CAG regions in the gene 

cause an abnormal form of huntingtin 

to be produced. 

Organelles: subunits within cells that 

carry out a specific function; mitochondria, 

for example, are the organelles 

that create usable energy for a cell. 

Pathogenesis: the development and 

progression of disease. 

Phosporylation: the addition of phosphates 

to a protein; phosporylation is 

one example of a post-translational 

modification and can be used to alter 

the activity of a protein. 

Post-translational Modifications: after a 

gene is translated into a protein it may 

undergo a variety of alterations. These 

changes, collectively referred to as 

post-translational modifications, alter 

the functionality of a protein, sometimes 

enabling it to work, other times marking 

the protein for degradation. 

Proteomics: the study of proteins and 

their function. 

Ribonucleic Acid (RNA): RNA serves as 

the intermediary between DNA and 

proteins. DNA is stored in the nucleus, 

the organelle frequently referred to as 

the “brains” of the cell, while the 

machinery needed to produce proteins 

remains in the cytoplasm. The cell relies 

on RNA to carry the DNA instructions 

from the nucleus into the cell’s 

cytoplasm. 

Signaling Pathway: when a cell needs 

to send a message to the nucleus (the 

“brain” of the cell where the genes are 

located), it must go through a series of 

events, much like a dominos game. 

This cascade of messages is called a 

signaling pathway. 

Transcription Regulation: cells require 

different proteins depending upon their 

stage of development. As a result, cells 

will vary which genes undergo transcription 

(see gene transcription) at different 

times and this process is known as 

transcription regulation. 

6

MAJOR INVESTORS TO THE HDSA COALITION FOR THE CURE 

These donors are the major investors in the HDSA Coalition for the Cure and are responsible for our expanded 

researchers efforts to discover and develop successful treatments for HD and, ultimately, a cure. 

COALITION RESEARCH 

LEADERSHIP INVESTORS 

Anonymous Family Fund 

Anonymous Foundation 

Helen Becker Memorial Fund 

Bruce and Janet Bergman 

Phyllis E. Dake 

Dobis Family Fund 

Fox Family and Friends Fund 

Woody & Marjorie Guthrie Research Fund 

Kuhn Family Fund 

Pilskaln Family and Friends Fund 

Robert A. Vaughan Family Fund 

Kent Westbrook Endowed Fund 

COALITION MAJOR INVESTORS 

Rebecca Ann Strawn Allen Memorial Fund 

Ash Family and Friends Fund 

Cassy Bachner Memorial Fund 

Lillian Barham Memorial Fund 

Blessing/Degnan Family Memorial Fund 

Boulavsky Family and Friends Fund 

Bretz/Wilhelmsen Family Fund 

Bruning Family Fund 

Charlotte Calhoun Charitable Trust 

Cancelmo Family Fund 

Kevin Carville Memorial Fund 

Chrysopolae Foundation 

Colyer Family and Friends Fund 

Michael Cronk Memorial Fund 

Bruce Dawson Family Fund 

Donnellan Family Fund 

William Doolan Fund 

Duffey-Giordano Family Fund 

William Elliott Memorial Fund 

Ess/Norqual Family Fund 

Patrick Allen Freeman Memorial Fund 

Barry French Memorial Fund 

Robert D. Grossman Fund 

Gudac Family Fund 

Hack/Kadera/Collins Family Fund 

HDSA Delaware Valley Chapter Fund 

HDSA South Florida Chapter Fund 

Jacobson Family and Friends Fund 

Lewis Jaffe Memorial Fund 

Kaplan Family Fund 

Keating Family Fund 

Knapp Family Fund 

Raymond Laarveld Family Fund 

Loraine Larsen Memorial Fund 

Lewandowski Family Fund 

Thomas Lyon, Sr. 

Douglas Marr Memorial Fund 

Mayer Family Fund 

Alice Meschko Family Fund 

Milek/Fecca/Baker Families Fund 

Miller Family Fund 

Mogel/Joseph Families Fund 

Marie Nemec Bike for a Cure Fund 

Steven Oades Memorial Fund 

Painter Family Fund 

Roger L. Pickett and Linda A. Kastberg 

Family Fund 

Quest Diagnostics 

Rohrbach Family Fund 

Delbert Rose Fund 

Ted Ross Family Fund 

Setten Family Fund 

Smith Family Fund 

Smrtnik/Fiore Family Fund 

Squared D Foundation 

Sidney Stern Memorial Trust 

Swanton Foundation 

Swisher Family Fund 

George and Abby Thomas Family Fund 

Tisch Foundation 

Charles Tolleson Memorial Family Fund 

Harold Wilcox and Family Fund 

MAJOR INVESTORS TO THE HDSA GRANT AND FELLOWSHIP RESEARCH PROGRAM 

These major investors have been instrumental in advancing and expanding the HDSA Grant and Fellowship 

Research Program: 

Allen Foundation 


Myrla Rae Bisbee Memorial Fund 

Ess/Norqual Family Fund 

Hartmann Family Fund 

Kuhn Family Fund 

Edith R. Stroud Memorial Fellowship 

Viau Family Fund 

MAJOR INVESTORS TO HDSA CENTERS OF EXCELLENCE AND CARE PROGRAM 

These major investors have enabled HDSA to expand its HDSA Centers of Excellence and other care and 

educational programs: 

American Contact Bridge League Charity 

Foundation 

American Speech-Language-Hearing 

Association 


Richard Martin Fund 

Kelly Miller Juvenile HD Fund 

Missouri Foundation for Health 

Donna Ryan Fund 

Dennis Shea Care Fund 

Bess Spiva Timmons Foundation 

Donald E. Thrower, II Juvenile HD Fund 

7

Shoot for the Cure Hoop-A-Thon 2004 

Billy Aaron Brown, star of TV and film, is 

spokesperson for HDSA’s national Shoot for the 

Cure Hoop-a-thon program. 

Last spring, Billy Aaron Brown, 

one of the stars of ABC TV’s 

hit show 8 Simple Rules for 

Dating my Teenage Daughter, 

stepped forward to become the 

official spokesperson for HDSA’s 

national Hoop-a-thon program, 

Shoot for the Cure. HDSA is very 

pleased to announce that not only is 

Billy Aaron Brown returning for 

2004 but he has pledged to make 

this year even better. When HDSA 

announced last June, during the 

annual convention, that Shoot for 

the Cure had raised almost $500,000 

for HDSA funded research, Billy Aaron 

Brown was so impressed that he 

immediately promised that his goal for 

2004 would be $1 million. 

Hoop-a-thons are fun events that bring 

together adults and kids of all ages to 

raise money by shooting baskets. Anyone 

can organize a Hoop-a-thon and anyone 

can be a shooter. All you need is a place 

to shoot hoops, friends, neighbors and 

family members who will shoot or pledge 

money for your shooters and an event 

date. HDSA provides the prizes, the how 

to manual, and the materials you need so 

you can run a successful Hoop. It’s easy 

to do and loads of fun. 

To celebrate Billy Aaron Brown’s second 

year as HDSA’s national spokesperson, 

the Grand Prize will be: round trip 

coach airfare (two nights/three days) for 

two to Los Angeles and a walk on role 

on Billy’s hit show 8 Simple Rules for 

Dating My Teenage Daughter. 

HDSA’s Walk-a-thon 

program for 2004 

will be featured in the next 

issue of Toward a Cure. 

Date Of Hoop HDSA Chapter 

January 24, 2004 North Carolina 

February 2004 New Jersey 

February 7, 2004 St. Louis, MO 

February 10, 2004 Northern California 

March 2004 Kentucky 

March 6, 2004 Northern California 

March 7, 2004 Upper Midwest Region/ 

Minnesota 

March 13, 2004 Iowa 

March 27, 2004 Upstate NY, 

South/Southwestern 

Region, Iowa, 

Northern California 

March 28, 2004 Iowa in Nebraska 

March 29, 2004 Iowa 

April 2004 Washington DC Metro 

April 3, 2003 Ohio Valley, 

Iowa in Missouri, 

Rocky Mountain 

In the Adult Individual Category - 

First Prize: Toshiba 27” Flat Screen TV; 

Second Prize: Toshiba DVD/VCR Combo; 

Third Prize: Nikon Coolpix Digital 

Camera. 

In the Youth Individual Category - 

First Prize: Double Shoot Basketball 

Game; Second Prize: RCA Personal 

CD/MP3 Player; Third Prize: Canon 

35 mm Camera Kit. 

Hoop-a-thons must take place between 

January 5 and May 16, 2004 and must be 

registered with HDSA in order to be eligible 

for national prizes. Pledge forms and 

revenue from participants must be received 

on or before May 31, 2004 from the Hoopa-thon 

organizers for the National Office to 

determine the winners. 

Hoop-a-thons are scheduled in 40 locations throughout the US. Please call 

HDSA to find out how you can be a part of any event listed or find out how 

you can organize your own Hoop-a-thon. 

Date Of Hoop 

April 4, 2004 



May 2004 

May 1, 2004 




June 2004 

July 2004 

HDSA Chapter 

Iowa 

New Jersey, Iowa, 

Western PA 

New Jersey 

Indiana, Iowa, 

Michigan (3), 

NE Ohio 

New England 

Region (3), 

Greater NY Region 

Ohio Valley 

North West 

Wisconsin 

Indiana, 

Central Ohio 

NE Ohio 

8

esearch 

updates 

HDSA’S $20 MILLION INVESTMENT IN RESEARCH 

The Past and the Present 

When Drs. James Watson 

and Francis Crick 

identified the double 

helix of DNA in 1953, they ushered in 

a new era in science and research – 

genomics. All life is composed of 

similar DNA sequences that have been 

inherited from our shared ancestors 

who lived hundreds of millions of years 

ago. Humans share many genes with 

fruit flies, worms and mice, as well as 

with bacteria and yeast, hence the 

reason that so much early HD research 

is conducted using yeast and cell 

models before moving into animal 

models such as flies, worms and mice. 

For instance, a human has 46 

chromosomes (23 pairs) with 28,000 – 

35,000 genes and about 3.1 billion base 

pairs. A mouse has 40 chromosomes 

with 22,500 – 30,000 genes and about 

2.7 billion base pairs. When researchers 

create HD mouse models to study HD, 

their results can provide a fundamental 

basis of how their research might be 

applied to a human affected by 

Huntington’s Disease. 

In 1983, researchers discovered the 

marker for HD on chromosome 4. This 

led to an intensive ten-year search for 

the actual gene. In 1993, HD 

researchers announced that they had 

identified the huntingtin gene and its 

CAG expansion mutation. 

In the ensuing decade, 

HD research, led by 

the HDSA Coalition 

for the Cure, has 

learned much 

more about the 

gene and how it 

may lead to the 

onset of Huntington’s Disease. Most 

basic is a new-found understanding of 

the huntingtin gene itself and how the 

CAG repeat length may account for a 

variation in age of onset or how other 

genes may modify the age of onset. 

Other basic research funded by HDSA 

has examined the roles of both normal 

(wild type) and mutant huntingtin, the 

processes of aggregation and cell death, 

as well as metabolic abnormalities and 

transcription. 

As well, HDSA funded scientists have 

developed and used cell and animal 

models to study aggregation and cell 

death, toxicity, gene transcription, 

and much more. These studies also 

examine, in part, translational research - 

how the knowledge that has been 

derived about cell death, toxicity or 

transcription will translate to human 

models and clinical trials. Some 

models have already been used in preclinical 

work to observe how potential 

drugs or therapeutic 

applications might apply to 

human subjects. To date, 

mouse models have been used 

by the HDSA Coalition for 

the Cure investigators to 

study Minocycline, Creatine, 

Co-enzyme Q10, and Cystamine, to 

name a few. The efficacy (effectiveness) 

and tolerability in animal models, and 

mouse models in particular, have 

yielded significant data as to how 

they might translate to humans. 

As data is collected and results remain 

favorable in pre-clinical studies, HDSA 

researchers will move into clinical trials 

that will use small patient bases to test 

safety, efficacy, benefits of treatments 

and drugs. In just the past three years, 

five clinical trials have been developed 

for Co-enzyme Q10, Ramacemide, 

Creatine, Minocycline, Cystamine and 

Phenyl butyrate, with more to follow. 

HDSA Centers of Excellence have 

served as sites for some of the clinical 

trials conducted to date. 

Since the inception of the HDSA 

Coalition for the Cure in 1997, our 

knowledge about Huntington’s Disease 

has increased dramatically. From the 

first grants of $183,000 in 1996 to 

a record commitment of almost $4 

million in 2002, HDSA has been the 

9

leader in developing new ways to look 

at an often under-diagnosed and 

misunderstood neurodegenerative 

disease. 

As you will read in this issue of 

The Marker, HDSA funded research 

stands on the cusp of a new and 

exciting era that will explore five 

significant questions that have 

developed through the six years that 

the HDSA Coalition for the Cure has 

been in existence. The answers to these 

questions will not only lead to effective 

therapies but will also put the pieces of 

the HD puzzle together. The corners of 

the puzzle have been fitted together, we 

know so much more now about HD; it’s 

time for us to work together to fill in 

the missing pieces at the center of the 

puzzle that will point us to effective 

therapies and ultimately a cure. 

In future issues of this magazine, you’ll 

read more about the newly defined 

Coalition for the Cure and HDSA’s 

new Drug Discovery Team. But take a 

moment to look at what HDSA’s $20 

million investment in research, 

through the prestigious Coalition for 

the Cure and innovative Grants and 

Fellows program, has accomplished 

in just six short years through the 

generous support of donors like you. 

This impressive list is broken down 

into four major areas of 

accomplishment: discoveries through 

‘basic’ research; breakthroughs using 

cell and animal models; advances 

through pre-clinical translational 

research; and findings from clinical 

research and trials. Each link in the 

chain notes the HDSA funded 

Coalition investigator or grant/fellow 

recipient who helped to fit together 

the corner pieces of the HD puzzle. 

MILESTONES 

IN HDSA FUNDED RESEARCH 

I. BASIC RESEARCH: 

Huntingtin Gene 

a. variation of CAG repeat length 

accounts for variation of age of onset 

(Drs. Marcy MacDonald, James 

Gusella, Michael Hayden, 

Christopher Ross) 

b. instability of CAG repeat length 

accounts for anticipation 

(Drs. MacDonald, Hayden, Ross, 

Gusella) 

c. variation in CAG repeat length in 

different neurons may contribute to 

cell death (Dr. Peggy Shelbourne) 

d. other genes may modify age of onset 

of HD (Drs. Gusella, Ross, Hayden) 

Huntingtin protein 

a. Normal function of huntingtin 

b. HD is predominantly caused by 

toxic activity of mutant huntingtin 

(Dr. Elena Cattaneo) 

c. loss of normal huntingtin may 

contribute to HD (Drs. Hayden, 

Cattaneo) 

d. interaction partners of huntingtin 

help clarify its abnormal function 

(Drs. Ross, Hayden, MacDonald, 

Erich Wanker) 

Aggregation 

a. Mutant huntingtin promotes 

formation of insoluble aggregates 

(Dr. Wanker) 

b. Insoluble clumps of proteins found in 

brains of HD mouse models 

(Drs. Wanker, Bates, Davies) 

c. Insoluble clumps of proteins also 

found in human HD brains 

(Drs. Wanker, Marian DiFiglia, Ross) 

d. Aggregation prevents cell from 

degrading old and damaged proteins 

(protesome) (Drs. Ron Kopito, Wanker, 

Rick Morimoto) 

Proteolysis 

a. Huntingtin protein is cut into pieces 

by proteases which may generate a 

toxic fragment (Drs. Hayden, Ross, 

DiFiglia, Lisa Ellerby) 

Metabolism 

a. Metabolic derangements can mimic 

toxicity seen in HD (Drs. M. Flint 

Beal, J. Timothy Greenamyre) 

b. HD involves metabolic abnormalities 

(Drs. Beal, Greenamyre, Akira Sawa) 

c. Huntingtin can directly interfere 

with mitochondrial metabolic function 

(Dr. Greenamyre) 

Transcription 

a. Mutant huntingtin interferes with 

normal gene transcription (Drs. Leslie 

Thompson, Ross, Jang-Ho Cha, 

Steven Hersch) 

b. Nuclear location of huntingtin 

enhances toxicity (Dr. Ross)

II. CELL AND ANIMAL MODELS 

A. Mouse models 

a. development of transgenic mouse 

models (Drs. Gillian Bates, David 

Borschelt, Ross, Hayden) 

b. HD knock in mouse models with 

relatively selective striatial 

abnormalities (Drs. MacDonald, 

Detloff*) 

c. Development of YAC transgenic 

mouse model (Dr. Hayden) 

d. DNA repair enzymes can correct for 

triplet repeat expansion in HD mouse 

models (Drs. Vanessa Wheeler, 

MacDonald) 

e. HD mice have altered gene 

transcription patterns (Drs. Ruth 

Luthi-Carter, Cha, Ross, Borschelt) 

B. Fruit Fly model 

a. huntingtin reproduces aggregation 

and cell death (Drs. Nancy Bonini and 

Thompson) 

b. genetic interacters discovered 

(Drs. Bonini, Thompson) 

C. Worm models 

a. worm model of polyglutamine 

diseases and HD (Dr. Morimoto) 

D. Cell models 

a. Cell models replicate aggregation 

and toxicity (Drs. DiFiglia, Ross, 

Hayden, Jeffrey Keller) 

b. Cell models suggest role for calcium 

and excitotoxicity (Drs. Lynn 

Raymond, Hayden, Ilya Bezprozvanny) 

E. Viral models 

a. Viral expression HD model with 

neuronal cell death (Dr. Ross) 

F. Yeast models 

a. yeast model has been used to 

measure toxicity 

III. PRE-CLINICAL TRANSLATIONAL 

RESEARCH AND DRUG DISCOVERY 

Mouse models are used most often to test 

prior to any potential drug or therapy 

going to clinical trials 

a. minocycline slows progression in 

HD mice (Dr. Robert Friedlander) 

b. chemical compounds identified that 

prevent accumulation of insoluble 

huntingtin protein aggregates 

(Dr. Wanker). 

c. phenyl butyrate and SAHA slow 

progression in HD mice (Drs. Hersch, 

Bates, Robert Ferrante) 

d. creatine slows progression of HD in 

mice (Drs. Beal, Ferrante, Hersch) 

e. Co Q10 slows progression in mice 

(Drs. Beal, Hersch, Ferrante, Ross, 

Borshelt) 

f. cystamine slows progression of HD in 

mouse model (Drs. Beal, Hersch, 

Ferrante) 

g. Cell models screen for therapeutic 

compounds (Drs. Ross, Keller) 

Phenyl butrate in cell models has 

been found to prevent some of 

the negative effects of mutant 

huntingtin. (Dr. Hersch) 

h Fruit fly model showed reduced 

neuronal degeneration and cell death 

when fed HDAC inhibitors. 

(Drs. Thompson, Bonini) 

IV. CLINICAL RESEARCH AND 

CLINICAL TRIALS 

MRI for tracing changes in clinical 

trials (Dr. Elizabeth Aylward) 

Functional and metabolic imaging of 

brain abnormalities in HD 

(Drs. Hayden, Jenkins*) 

MRI and functional imaging for 

identifying early brain changes in 

presymptomatic individuals (Drs. 

Aylward, Christine Fennema-Notestine) 

CARE–HD study gives first clue to 

therapeutic effect in clinical trial 

(HSG/HDSA COE led study) 

MINO – feasibility of minocycline as 

a clinical treatment (Dr. Friedlander) 

Creatine – feasibility of creatine as a 

therapeutic intervention 

(Drs. Hersch, Penelope Hogarth) 

Tetrabenazine – feasibility of 

tetrabenezine as a therapeutic 

intervention (Dr. Fred Marshall*) 

Phenyl butyrate – safety and clinical 

effects of proscribed dose in 

symptomatic individuals. (Dr. Hersch) 

PHAROS – observational study for 

early signs of HD in asymptomatic 

individuals 

PREDICT – observational study for 

gene tested individuals to recognize 

early symptoms of HD using MR 

Imaging. 

HDSA Nears Goal for Generation 

2000: Fulfilling the Promise 

Since launching this campaign in 

2000, generous donors have given 

more than $18 million towards our 

goal of $25 million to fund research 

by 2005. Please join our efforts 

today to make this the last 

generation with HD. Make your 

contribution today and see it tripled 

through HDSA’s new Research 

Matching Gifts Challenge Fund. 

HDSA wishes to thank Christopher Ross, 

M.D., Ph.D., HDSA Coalition for the 

Cure investigator and former Chair of 

HDSA’s Medical and Scientific Advisory 

Committee for creating the chart of 

Milestones in HD Research. 

*denotes non HDSA funded researcher 

11

CELEBRATION of 

of 

ELEBRATION HOPE 

HDSA Provides 

HOPE 

auctioneer. Leo and Linda Goto served 

HDSA has long been recognized as the leader in the care and cure of 

HD. From the handful of volunteers assembled by Marjorie Guthrie 

in the 1970’s, HDSA has grown impressively in just 35 years to a $10 

million organization with a national presence in research, support and 

care. From state to state, individual donors, like you, fund HDSA 

programs through direct cash contributions, family funds, lead gifts of 

stock and through support of special events such as the HDSA 

Celebration of Hope. HDSA receives no direct federal or state support 

yet funds almost $3 million in care and $3 million in research programs. 

Even in challenging economic times, HDSA has never failed to fulfill its 

commitments to researchers or Centers of Excellence for care. Every 

dollar contributed funds our HDSA Coalition for the Cure, our Grant 

and Fellow recipients, Centers of Excellence, support groups, educational 

seminars, statewide conventions, our annual convention, community 

outreach programs and so much more. Won’t you consider making your 

donation today to any one of HDSA’s research or care initiatives. 

Together, we can make this the last generation with HD. 

CARE AND CURE from Coast to Coast 

as Honorary Co-Chairs of the event. 

OCTOBER 2, 2003 

The Seventh Annual Guthrie Awards 

Dinner was held in New York City to 

benefit the Woody and Marjorie 

Guthrie Research Fund which supports 

the HDSA Coalition for the Cure. A 

complete summary of the event has 

been highlighted in the most recent 

issue of Toward a Cure. Honorees 

included Stanley Fahn, M.D., Rick 

Stewart/Amarin Corporation plc, John 

Mellencamp and Dean and Susie 

Spanos. Judy Collins reprised her role 

as Mistress of Ceremonies. Event Chairs 

were Nora Guthrie and Harold 

Leventhal. 

AUGUST 23, 2003 SEPTEMBER 17, 2003 

The St. Louis Zoo served as the The fifth annual Celebration of Hope 

backdrop for this annual Celebration of dinner to benefit the HDSA Center of 

Hope event that benefited the HDSA Excellence at Colorado Neurological 

Center of Excellence at Washington Institute was held at the Donald R. 

University School of Medicine. The Seawall Grand Ballroom in Denver CO. 

2003 honorees included William The event included a silent auction and 

Landau, M.D., Professor of Neurology special HD presentation that featured a 

at Washington University, who video PSA developed as an in-kind gift 

received the Hope Award, J. Kim by the Denver Media Center, readings 

Tucci, President and co-owner of The from HDSA’s Journal of Hope and the 

Pasta House Company, who received debut of an original song about HD by 

the Community Award, and Missouri the acappella group MULTI. 

State Senator, Patrick Dougherty, who 

Honorees included Jamie Angelich, 

received the Humanitarian Award. 

Wanda and Larry Fanning, Michael 

John Mills, news reporter for KMOV 

Hancock and Kathleen M. O’Connor, 

channel 4, acted as Master of 

MPS. Kim Christiansen, 9NEWS 

Ceremonies. 

anchor, served as Mistress of 

Ceremonies. Norm Early, former 

Denver DA and current attorney and 

author, reprised his role as guest 

Barbara Boyle, HDSA 

KEY 

National Executive 

Director/CEO (c) with Guthrie Award honorees Rick 

= Chapters (34) 

Stewart/Amarin Corporation, plc., John Melencamp, 

Susie and Dean Spanos. 

= Centers of Excellence (17) 

= Coalition (17) 

KEY 

= Grants and Fellows (19) 

= Therapeutics Researchers (5) 

= Chapters (34) = Support Groups (148) 

= Centers of = Excellence Social Workers (17) (24) 

= Coalition (17) 

= Grants Quantities and Fellows (19) 

= Therapeutics = Researchers 1 (5) 

= Support Groups 

= 2 

(148) 

= Social Workers (24) 

= 3 

Quantities 

= 4 

= 1 

i.e. 

= 2 = 4 Support Groups 

= 3 

= 4 

12 

i.e. 

= 4 Support Groups


The Grand Ballroom of the Grand 

Hyatt in Buckhead GA served as the 

backdrop for an “Evening in Monte 

Carlo” that was held in support of the 

HDSA Center of Excellence at Emory 

University. Honorees included 

Billy and Henry “Hank” Aaron who 

received the Team Hope Award for 

Humanitarian and Community Services, 

Jim Calhoun, former President of the 

HDSA Georgia chapter and former 

HDSA Chair of the National Field 

Committee, who received the Patient 

and Family Services Award, J. Timothy 

Greenamyre, M.D., Ph.D., co-director 

of the HDSA Center of Excellence 

at Emory and HDSA Coalition for 

the Cure researcher who received 

the Medical Leadership Award and 

James B. Gavin III, M.D., Ph.D., 

President of Morehouse School of 

Medicine, who was presented with the 

International Health Leadership Award. 

Monica Kaufman, WSB-TV news 

anchor, served as emcee of the event. 

Special thanks are extended to 

Bill Kline and his daughter Kristin 

for their management of the Silent 

Auction and to Lyman Dillon who 

served as Reservation Chair. 


Honoree Dr. Jody Corey-Bloom is flanked by Barbara 

Boyle, HDSA National Executive Director/CEO and 

Sandy Sanford, President, HDSA San Diego Chapter 

A Celebration of Hope dinner was held 

at the Manchester Grand Hyatt Hotel 

to benefit both the HDSA Center of 

Excellence at the University of 

California at San Diego and research 

being funded by HDSA in the San 

Diego area. The 2003 honorees 

BC, CANADA 

WA 

VT 

ME 

CA 

OR 

NV 

ID 

AZ 

UT 

MT 

WY 

CO 

NM 

ND 

SD 

NE 

KS 

OK 

KEY 

MN 

= Chapters (34) 

WI = Centers of Excellence (17) 

= Coalition MI (17) 

= Grants and Fellows (19) 

IA 

= Therapeutics Researchers (5) 

= Support Groups (148) OH 

IL 

IN 

= Social Workers (24) 

WV 

Quantities 

MO 

KY 

= 1 

= 2 TN 

AR 

= 3 

SC 

= 4 

MS AL GA 

i.e. 

NY 

PA 

VA 

NC 

NJ 

DE 

MD 

DC 

NH 

MA 

RI 

CT 

TX 

LA 

= 4 Support Groups 

AK 

FL 

EUROPE 

HI 

= 

= 

= 

= 

Grants & Fellows UK (2) 

Coalition Researchers UK (1) 

Coalition Researchers Italy (1) 

Coalition Researchers Germany (1) 

13

CELEBRATION of 

HOPE 

included Jody Corey-Bloom, M.D., Ph.D., 

Director of the HDSA Center of 

Excellence at UC San Diego and 

Marcellus Wiley of the San Diego 

Chargers. A special tribute was paid to 

Charlene Berger, noted San Diego 

philanthropist. The dinner also 

recognized Dean and Susie Spanos who 

had previously received the HDSA 

Harold Leventhal Community Service 

Award from HDSA at the Seventh 

Annual Guthrie Awards Dinner that 

was held in New York City on October 2. 

In addition to being honored, 

Marcellus Wiley also served as 

the guest auctioneer for the event. 

Cheryl and Ron Kendrick reprised 

their roles as Chairs. 

NOVEMBER 6, 2003 

The Hyatt Regency Sacramento hosted 

the recent Celebration of Hope dinner 

to benefit both the HDSA Center of 

Excellence at the University of 

California at Davis and HDSA funded 

research being conducted at the Buck 

Institute for Aging in Novato and at 

From Left: Mark Hoag, Honorees Dick Colvin, Sandy 

Smoley, Joseph Silva, M.D. with Starr Walton Hurley 

and Beth and Stan Johnson 

Stanford University. Sacramento 

Mayor Heather Fargo served as 

Honorary Chair with Dr. Conrad 

and Mrs. Christina Pappas serving 

as Co-Chairs. Diana Penna, health 

reporter for KOVR-TV reprised her role 

as Mistress of Ceremonies. The 2003 

honorees included Dick Colvin, Vice 

President of Marketing for PennySaver 

Publications, Joseph Silva, Jr., M.D., 

Dean of the School of Medicine at UC 

Davis and Sandy Smoley, R.N., B.S.N., 

former Secretary of California’s State 

Health and Welfare Agency. The 

Johnson Family received a special 

award for their continuing efforts to 

raise awareness and help find a cure for 

HD while a short video highlighted 

Bryan Medrano’s participation in 

Xterra Triathlons and his dedication 

in the fight against HD. Adam Austin, 

noted singer and guitarist, provided 

entertainment. A special addition to 

the silent auction featured The Gallery, 

an exhibition of Bay area artists, 

provided by noted artist, Daniela Aldini. 

NOVEMBER 11, 2003 

The third annual G. William Fox 

Corporate Humanitarian Award 

Dinner was held at the Philadelphia 

Marriott Hotel. This stellar event 

raised several hundred thousand 

dollars for HDSA funded research and 

honored Commerce Bank/Glenn 

Holck, President Pennsylvania. Charles 

“Chip” Roach, president of Fox 

Prudential Roach Real Estate reprised 

his role as Chair of the event for a third 

year. The Robert Madden Leadership 

Award was presented to Jay Tolson. 

DECEMBER 7, 2003 

The Upper Midwest Region hosted 

its first “Evening in Monte Carlo” 

at the Northland Inn in support of 

the care and cure of HD. Inaugural 

recipients of HDSA’s Ace Awards 

included Harry Orr, M.D., Ph.D. and 

Janet Dubinsky, Ph.D. for their HD 

Research; Jerry Setten for Corporate 

Humanitarianism and Leadership; 

Dennis and Sandra Voydetich 

for Family Leadership; and Beryl 

Westphal, APRN for Patient and 

Family Services. A $20,000 lead gift 

was received from Bruce and Janet 

Bergman to support the services 

provided by the HDSA Center of 

Excellence at Hennepin County 

Medical Center while another $25,000 

lead gift was given by Jack and 

Gretchen Norqual to support HDSA 

sponsored research in Minnesota. 

DECEMBER 8, 2003 

Dr. Tom Bird (l) accepts check from Edward “Ted” 

Morgan, President, HDSA Northwest chapter in 

Seattle. 

Edward Morgan, President of the 

HDSA Northwest Chapter in Seattle 

Washington, proudly presented an 

HDSA check in the amount of $16,000 

to Thomas Bird, M.D., Director of the 

HDSA Center of Excellence at the 

University of Washington. Proceeds were 

raised through a variety of special events 

sponsored by the chapter throughout the 

year. The payment represents half of the 

annual grant made by the Huntington’s 

Disease Society of America (HDSA) to 

the Center of Excellence at the 

University of Washington. A previous 

payment of $12,500 was made to the 

HDSA Center of Excellence from funds 

also raised by the HDSA Northwest 

chapter earlier in the year. 

14

HDSA CENTERS OF EXCELLENCE 

LEAD WAY IN RESEARCH EFFORTS 

Become a Part of the Team! Be a Part of the Cure! 

The Center of Excellence 

program is an integral part of 

HDSA’s network of support 

and services for our HD families 

across the US. HDSA Centers of 

Excellence serve as hubs for state of 

art medical services that include 

genetic testing and counseling, 

neurology, psychology/ psychiatry, 

assistive therapies including speech, 

physical and occupational, as well as 

nutrition and social support services. 

But in addition to providing 

outstanding medical and social 

services and support, every HDSA 

Center of Excellence is a gateway to 

clinical and observational research 

“...HDSA Center of 

Excellence is a gateway to 

clinical and observational 

research opportunities that 

may yield an effective 

treatment or cure...” 

opportunities that may yield an 

effective treatment or cure for HD. 

On the following pages you will find 

updated information for HDSA 

Centers of Excellence as well as the 

research that is being conducted at 

each. If you are interested in participating 

in a clinical or observational 

trial or research 

study, please 

call the contact 

listed for that 

study/trial to 

learn the 

specific criteria 

needed for that 

study. A brief 

description of 

each research 

study is 

included 

following the 

list of HDSA 

Centers of 

Excellence. 

It was through 

the sacrifice of 

our HD families 

in 1983 and 

again in 1993 

that researchers 

found the first 

‘marker’ for HD and then the 

location of the defective gene that 

causes the disease. You can help to 

break new ground and advance 

research in the care and cure of HD. 

Join the HDSA research team – be a 

part of the cure! 

15

HDSA CENTERS OF EXCELLENCE 

NEW ENGLAND 

New England HDSA Center of 

Excellence 

Charlestown, MA 02129 

Director: Steven Hersch, M.D., Ph.D. 

Center Contact: Yoshio Kaneko 

Phone: 617-724-2227 

Email: ykaneko@partners.org 

Social Worker: Judith Sinsheimer 

Phone: 617-726-2603 

Email: jsinsheimer@partners.org 

Current Research Opportunities 

Contact Yoshio Kaneko for PREDICT-HD; 

PHEND-HD; CREST; Longitudinal 

UHDRS database. HD MAPS (contact 

Ana Russ: 617-638-5483); PHAROS (contact 

Sona Gevorkian: 617-726-5892); 

Pre2Care (contact Kimberly Ferrante: 

617-724-4246) 

MIDDLE ATLANTIC 


University of Rochester 

Rochester, NY 14620 

Directors: Ira Shoulson, M.D.; Peter 

Como, Ph.D.; Karl Kieburtz, M.D. 

Center Contact: Leslie Briner 

Phone: 585-273-4147 

Email: leslie.briner@ctcc.rochester.edu 

Social Worker: Amy Chesire, CSW-R, 

MSG 

Phone: 585-341-7519 

Email: amy.chesire@ctcc.rochester.edu 


For PHAROS; CREST; and Pre2CARE 

(contact Carol Zimmerman: 

585-341-7500); 

For PREDICT-HD (contact Amy Chesire: 

585-341-7519); Neuropsychiatric 

Inventory in HD (contact Fredrick 

Marshall: 585-275-0557); PHEND-HD 

HDSA Center of Excellence at 

Columbia Health Sciences/NYS 

Psychiatric Institute 

New York, NY 10032 

Director: Karen Marder, M.D. 

Center Contact: Deborah Thorne, CSW 

Phone: 212-305-9172 

Social Worker: same as above 


For PHAROS, PHAIMOS; and Brain Bank 

donor program (contact Carol 

Moskowitz: 212-305-5779); PREDICT–HD 

(contact Paula Leber: 212-305-4597 or 

Jennifer Williamson: 212-305-4655); for 

Interviews on Living with HD (contact Dr. 

Robert Klitzman: 212-740-7324); 

Changes in Walking Patterns (contact 

Deborah Thorne: 212-305-9172). 

George G. Powell HDSA Center of 

Excellence at North Shore University 

Hospital 

Manhasset, NY 11030 

Director: Andrew Feigin, M.D. 

Center Contact: Mary Ellen Benisatto 

Phone: 516-869-9527 

Social Worker: Ellen Landau, CSW 

Phone: 516-869-9527 


PHAROS; CREST; TETRA-HD; PET 

Imaging (contact Dennis Zgaljardic, 

Ph.D. for all research studies: 

516-562-2401) 

HDSA Center of Excellence 

at Johns Hopkins 

Baltimore, MD 21287 

Directors: Christopher Ross, M.D., Ph.D. 

Adam Rosenblatt, M.D. 

Center Contact: Debbie Pollard 

Phone: 410-955-2398 

Email: dpollard@jhmi.edu 

Social Worker: Catherine McFarlane 

Phone: 410-955-2497 

Email: cmcfarl1@jhmi.edu 


For Longitudinal UHDRS database, PRE- 

DICT, Outreach Study, Brain Bank (donor 

program), Identification of Neurological 

and Psychiatric Disorders (contact Lisa 

Gourley: 410-955-1349); for PHAROS 

and presymptomatic testing (contact 

Debbie Pollard: 410- 955-2398); Genetic 

Factors that Influence HD, HD MAPS, 

fMRI Study 

16


University of Virginia 

Charlottesville, VA 22908 

Director: Madaline Harrison 

Center Contact: Pat Allinson, MS 

Phone: 434-924-2665 

Email: 

psa9m@hscmail.mcc.virginia.edu 

Social Worker: Kenneth Cady, MSW 

Phone: 866-290-4528 

Email: KLC2S@virginia.edu 


For Longitudinal UHDRS database 

and HD MAPS (contact Dr. Harrison, 

434-924-5568); PHAROS (contact 

Elke Rost-Ruffner, BSN: 434-243-5422) 

SOUTH 

HDSA Center of Excellence at Emory 

School of Medicine 

Atlanta, GA 30329 

Directors: Randi Jones, Ph.D. 

J. Timothy Greenamyre, M.D., Ph.D. 

Center Contact: Joan Harrison, GNP 

Phone: 404-728-6364 

Email: jharri2@emory.edu 

Social Worker: H. Taylor Butler, 

LCSW 

Phone: 404-728-6822 

Email: hbutler@emory.edu 


PHAROS; PREDICT-HD; TETRA-HD 

(contact Joan Harrison for all research 

studies) 


University of Alabama 

Birmingham, AL 35233 

Director: Leon Dure, M.D. 

Center Contact: Stacey Mantooth 

Phone: 205-996-7850 

Email: smantooth@peds.uab.edu 

Social Worker: Lynda Williams 

Phone: 205-939-9085 

Email: Lynda.Williams@chsys.org 


For PHAROS, Longitudinal UHDRS 

database (contact Donna Pendley: 

205-996-7865) 

MIDWEST 

HDSA Center of Excellence at Ohio 

State University 

Columbus, OH 43210 

Director: Sandra Kostyk, M.D., Ph.D. 

Center Contact: Nonna Stepanov 

Phone: 614-688-8672 

Email: stepanov-1@medctr.osu.edu 

Social Worker: Barbara Heiman MSW 

Phone: 614-292-9960 

Email: barbheiman@juno.com 


PHAROS; TETRA-HD; Longitudinal 

UHDRS database; Immume-HD (contact 

Nonna Stepanov for all research studies: 

614-688-8672) 


University of Iowa Hospitals and 

Clinics 

Iowa City, IA 52242 

Directors: Jane Paulsen, Ph.D.; Henry 

Paulson, M.D.; Robert Rodnitzky, M.D. 

Center Contact: Anne Leserman 

Phone: 319-353-4307 

Email: hdinfo@uiowa.edu 

Social Worker: Anne Leserman 

Phone: 319-353-4307 

Email: anne-leserman@uiowa.edu 


PREDICT-HD; PHAROS; HD MAPS; HD 

Battery; fMRI; PET Imaging; MRI; 

PHEND-HD; Startle in Pre-Symptomatic 

HD; Genetic Discrimination Study; 

Optimism 

(contact Elizabeth Penziner for all 

research studies: 319-353-4292) 


Hennepin County Medical Center 

Minneapolis, MN 55415 

Director: Martha Nance, M.D. 

Center Contact: Beryl Westphal, APRN 

Phone: 612-873-6024 or 

612-873-2595 

Social Worker: Linda Hickman 

Phone: 612-873-3369 


For TETRA-HD; PREDICT-HD; PHAROS; 

HD MAPS (contact Dawn Radtke: 

612-873-2943); for PHAROS Qualitative 

Interviews (contact Beryl Westphal) 


Washington University School 

of Medicine 

St. Louis, MO 63110 

Director: Joel Perlmutter, M.D. 

Center Contact: 

Melinda Kavanaugh, MSW 

Phone: 314-362-3471 

Email: kavanaughm@neuro.wustl.edu 

Social Worker: same as above 

Current Research Opportunities: 

OxPhos (contact Lori Minnich, BSN, RN: 

314-362-7148); PREDICT-HD (contact 

Melinda Kavanaugh: 314-362-3471); 

PHAROS (contact Laura Good: 

314-747-0531) 

SOUTHWEST 

HDSA Center of Excellence at Baylor 

College of Medicine 

Houston, TX 77030 

Director: Joseph Jankovic, M.D. 

Center Contact: 

Christine Hunter, RN, CCRC 

Phone: 713-798-3951 

Email: chunter@bcm.tmc.edu 

Center Patient Advocate: 

Karinna Pacheco, BA 

Phone: 713-798-5994 

Email: dpacheco@bcm.tmc.edu 


PHAROS (contact Kevin Vuong: 

713-798-5427); for PREDICT-HD 

(contact Karinna Pacheco: 

713-798-5994); Longitudinal UHDRS 

database; TETRA-HD; TETRA 

Withdrawal (contact Christine Hunter: 

713-798-3951) 


Colorado Neurological Institute 

Englewood, CO 80033 

Director: Lauren Seeberger, M.D. 

Center Contact: Sherrie Montellano 

Phone: 303-788-4600 


PHAROS (contact: Robin Doresey: 

303-783-4976) 

PREDICT-HD (contact: Sherrie 

Montellano: 303-788-4600) 

17

WHAT DO EACH OF THESE HD PROJECTS STUDY? 

Brain Bank: The purpose is to obtain brain 

tissue from individuals with HD and related 

disorders in order to better understand the 

pathological changes that occur in the 

brain (See Fulfilling the Promise issue of 

The Marker for complete list of brain banks 

for HD). 

Changes in Walking Patterns: A pilot 

study that defines problems and develops 

strategies for improving gait in early HD. 

CREST: Creatine Safety and Tolerability in 

HD determines the safety and tolerability of 

Creatine in patients with HD as well as 

whether Creatine is beneficial in treating 

the symptoms of the disease. 

fMRI: Functional Magnetic Resonance 

Imaging is used to produce pictures of the 

brain. Gene positive, pre-symptomatic 

adults (18 years and older) are being 

recruited for this four-hour project that 

takes place in Milwaukee, WI. 

Genetic Discrimination Study asks those 

who have been genetically tested to 

participate in a one-time telephone 

interview to gather information about 

experiences and perceptions regarding 

discrimination in order to identify topics of 

concern to those at risk for HD. 

Genetic Factors that Influence HD: The 

purpose is to find genes that modify age of 

onset or other features of HD. Finding these 

genes may provide clues for therapeutic 

approaches. HD MAPS is a larger study of 

this premise. 

General HD Battery asks individuals at 

risk or diagnosed with HD to participate in 

this yearly two hour study which assesses 

motor, psychiatric, cognitive and behavioral 

changes. 

HD and Long Term Care: This study 

looked at the characteristics that predicted 

nursing home placement for people with 

HD. This study has been completed but a 

modified study is being considered. 

HD MAPS: HD Modifiers in Age at 

onset in Pairs of Siblings uses siblings to 

investigate the genetic factors that 

influence the age at which HD onset occurs 

and its severity. The study requires a blood 

sample from affected brothers and sisters 

and information about age of onset. 

Identification of Neurological and 

Psychiatric Disorders: This study identifies 

and characterizes the genetic causes of 

inherited neurological and psychiatric 

disorders. Participants must be affected with 

symptoms similar to HD. 

Immune-HD studies the alterations in 

systemic immune functions in HD. 

Interviews on Living with HD: Interviews 

are conducted with individuals who have or 

are at risk for genetically related disorders, 

including HD, concerning their views on 

genetic privacy and their experiences. 

Longitudinal UHDRS database is a multiyear 

project to develop a database of 

individuals that are at risk or have HD. 

This information will ultimately be used to 

plan for future research studies. 

Memantine for HD: Study sponsored by 

Forest Pharmaceuticals of the effects of 

memantine on cognition, behavior and 

functioning in HD. 

MRI: Gene positive individuals may 

participate in this project that uses 

magnetic resonance imaging (MRI) scans 

to measure the volume of different regions 

of the brain in order to gain information 

about the disease process for HD. 

Neuropsychiatry Inventory in HD is a 

unified effort by various HSG sites to 

gather standardized information concerning 

behavioral problems in individuals with HD 

as perceived by their primary caregiver in 

order to establish baseline clinical 

information that might lead to future 

studies/research. 

Optimism: This project studies optimism, 

coping styles and distress. Information 

gathered will help researchers understand 

how certain beliefs influence mental health 

and ways that people with HD deal with 

situations. 

Outreach Study: This study observes 

the development of symptoms of those 

diagnosed with HD over a lifetime. Patients 

are followed on an annual or bi-annual 

basis when no longer able to travel to clinic 

to monitor changes in the condition of 

each patient. This is an extension of the 

Longitudinal UHDRS database and allows 

those who can no longer attend clinic to 

contribute to research. 

OxPhos: This study looks at how people 

with HD use sugar and oxygen in the brain. 

PET Imaging: Positron Emission 

Topography (PET) is used to examine brain 

function in both HD patients and persons 

at risk for HD. The goals of the project are 

to explain the mechanisms underlying the 

different symptoms of HD and to find 

better ways to measure progression in HD. 

PHAIMOS: Prospective HD Assessment 

using Indices for Motor Skill is an HDSA 

funded study that looks at motor control in 

people who are gene positive for HD or 

have been recently diagnosed through one 

or more sessions lasting up to two hours. 

PHAROS: Prospective Huntington At 

Risk Observational Study looks at people 

who are at risk for HD to determine the 

earliest signs of the disease using interviews, 

surveys and examinations every 9 months 

for up to 10 visits. 

PHEND-HD: Phenylbutyrate 

Development for HD will evaluate the 

safety, tolerability and clinical impact 

of the drug phenylbutyrate and will begin 

in Spring 2004. The study will last 20 

weeks with a visit or telephone contact 

every four weeks. 

18

Pre2CARE: Pilot Safety and Tolerability 

Study of Co-Enzyme Q10 in HD and 

Normal Subjects will establish the 

tolerability of high dosages of Co-Enzyme 

Q10. Recruitment completed in January 

2004. 

PREDICT-HD: Neurobiological Predictors 

of HD Onset is an observational study that 

will help to define the earliest changes in 

HD. Information gained will help 

researchers to judge the effectiveness of 

future treatments more accurately. Gene 

positive but asymptomatic participants are 

evaluated through MR imaging, interviews 

and surveys once a year for four years. 

Quantifying Motor Abnormalities in HD: 

uses a computerized program, MOTUS, to 

quantify bradykinesia and chorea in HD. 

People with manifest HD are eligible for 

this study. 

Startle in Pre-Symptomatic HD 

characterizes the startle reflex, the 

unlearned response to a startling stimulus, 

in HD prior to the onset of motor 

symptoms. Adults (18 years or older) who 

have been gene tested and are presymptomatic 

will listen to varying sound 

decibel levels through headphones while 

their eye blink activity is measured. 

HDSA to Add Three 

TETRA-HD: Tetrabenazine for the 

Treatment of Huntington’s Chorea is 

designed to assess and gather information 

on the optimal dosage of tetrabenazine. 

Participants must be 18 years of age or older 

with chorea as a significant feature of their 

HD. 

TETRA Withdrawal: An FDA supported 

blind staggered five day withdrawal of 

approximately 2/3 of the 45 patients in the 

study who have been chronically on 

Tetrabenazine to help their chorea. 

NEW CENTERS OF EXCELLENCE 

in 2004! 

impact and importance of the HDSA Center of Excellence 

designation to the HD community of families and allied 

healthcare professionals. 

Thanks to an anonymous donor, HDSA has received a 

$150,000 ‘seed grant’ that will allow the Society to establish 

three new HDSA Centers of Excellence in 2004 and thus 

bring HDSA one step closer to its goal of establishing 25 Centers 

of Excellence by 2005. 

As part of HDSA’s continuing commitment to care, letters of 

interest were sought from major medical facilities throughout the 

country in late 2003 and selection of the top five was made by the 

Grants Subcommittee of the Center Program and Education 

Advisory Committee (CPEAC) in late fall for submission of a full 

application. The selection process will continue through 2004 and 

includes evaluation of the existing medical program for 

Huntington’s Disease, services that would be added as a result of 

the Center of Excellence designation, current patient base, 

estimated increase in patient base, support from the community as 

well as support from the HDSA chapter (where applicable). 

A recent study conducted by HDSA on the Center of Excellence 

program revealed that both the patient base and use of the Center 

as a hub for regional referrals and resources increases significantly 

over the first two years in the program thus illustrating the positive 

HDSA Centers of Excellence work closely with local primary 

care physicians to implement palliative care programs that 

provide the best quality of life for each HD patient between 

their annual or bi-annual visits to their Center of Excellence. 

Social workers at HDSA Centers of Excellence answer the 

needs of HD families in their community and area of service. 

HDSA Centers of Excellence also provide outreach and education 

to the community while relying upon the community to provide 

financial support through participation at special events, seminars, 

conferences and other Celebration of Hope events held to benefit 

that HDSA Center of Excellence. 

The five areas which have been invited to submit full applications 

for consideration as an HDSA Center of Excellence in 2004 are: 

■ 

■ 

■ 

■ 

■ 

Indianapolis, IN 

Chicago, IL 

Tampa, FL 

San Francisco, CA 

Los Angeles, CA. 

The three facilities that are ranked highest by the various 

reviewing committees will be presented to the HDSA national 

Board of Trustees in October 2004 for final review and approval. 

Grants would commence on an annual basis thereafter. The 

results of the October 2004 Board of Trustees meeting will be 

published in an HDSA national publication.

CCA AR RE EGG I IV VE ER RS S ’ ’ L LI INN K K 

HDSA thanks 

The Bess Spiva 

Timmons Foundation, 

a Founding Benefactor, 

for its sponsorship of 

Caregivers’ Link, which 

includes the following 

articles in this issue: 

Caregiver Depression, 

Update on Social Security 

Disability and Planning 

Ahead with Long Term 

Care Insurance. 

Caregiver Depression 

One of today’s all-too silent health 

crises is caregiver depression. 

A conservative estimate reports 

that 20% of family caregivers suffer from 

depression, twice the rate of the general 

population. A study by the California 

Caregiver Resource Centers found that 

41% of former caregivers of a spouse with 

Alzheimer’s or other form of dementia 

experience mild to severe depression up 

to three years after their spouse had died. 

In general, women caregivers experience 

depression at a higher rate than men. 

Caregiving doesn’t cause depression nor will 

everyone who provides care experience the 

negative feelings that go with depression. 

But in an effort to provide the best possible 

care for a family member or friend, 

caregivers often sacrifice their own physical 

and emotional needs. The resulting feelings 

of anger, anxiety, sadness, isolation, 

exhaustion – and then guilt for having these 

feelings – can extract a heavy toll. 

Unfortunately, feelings of depression are 

often seen as a sign of weakness. Comments 

such as ‘snap out of it,’ or ‘it’s all in your 

head’ are not helpful and reflect a belief that 

mental health concerns are not real. 

Ignoring or denying your feelings will not 

make them go away. 

People experience depression in different 

ways, and the type and degree of symptoms 

can vary by individual and change over 

time. The following symptoms may indicate 

depression if experienced for more than two 

consecutive weeks: 

• Change in eating habits that results in 

unwanted weight loss or gain; 

• Change in sleep patterns – too much or 

not enough sleep; 

• Feeling tired all the time; 

• Loss of interest in people and/or 

activities that once brought pleasure; 

• Becoming easily agitated or angered; 

• Feeling that nothing you do is good 

enough; 

• Thoughts of death or suicide, or 

attempting suicide; 

• Ongoing physical symptoms that do not 

respond to treatment such as 

headaches, digestive disorders and 

chronic pain. 

Early attention to symptoms of depression 

may help to prevent more serious depression 

over time. The National Institute of Mental 

Health offers the following recommendations 

to cope with depression: 

1. Set realistic goals. 

2. Break large tasks into small ones, 

prioritize and do what you can. 

3. Try to be with other people and 

confide in someone; it is usually better 

than being alone and secretive. 

4. Participate in activities that make 

you feel better such as exercise, going 

to a movie or attending a religious or 

social event. 

5. Expect your mood to improve 

gradually. 

20 

continued on page 32

Social Security Disability Update 

By Suzanne Doggett, Esq. 

Huntington’s Disease is a 

hereditary brain disorder that 

slowly robs the individual of 

his/her ability to walk, talk, think and 

reason. Eventually, the person affected by 

HD will rely upon someone for assistance 

in all of their daily needs. 

However, long before that stage of the 

disease, most people affected by HD will 

lose their ability to work and find that 

they must apply to the Social Security 

Administration (SSA) for benefits under 

Social Security Disability Income 

Blue Book has limited information about 

Huntington’s Disease and even refers to 

HD as Huntington’s Chorea, thus ignoring 

the mental and emotional aspects of the 

disease. 

Individuals, family members, social 

workers and doctors at our HDSA 

Centers of Excellence report a variety 

of difficulties and delays in obtaining 

social security disability benefits. The 

difficulties in obtaining benefits can 

be categorized as follows: 

•The absence of readily apparent 

“...HDSA Centers of Excellence report a 

variety of difficulties and delays in obtaining 

social security disability benefits.” 

•Difficulty, given the often subtle 

onset of symptoms, in pinpointing 

exactly when a person with HD first 

became disabled; 

•Lack of familiarity with HD on the 

part of many caseworkers. 

(SSDI). This life line provides financial 

benefits for those determined to be 

disabled under a variety of definitions 

including medical, mental and emotional. 

Those who apply for this form of 

assistance are required to complete 

an extensive application for benefits 

including a medical report and 

supporting letter of disability from the 

patient’s neurologist or primary care 

physician familiar with the disease or 

condition. 

Currently, Social Security 

Administration caseworkers rely upon 

neurological medical criteria set forth in 

a book called Disability Evaluation Under 

Social Security (often referred to as the 

Blue Book because of its original blue 

cover) in making decisions about an 

individual’s eligibility for social security 

disability benefits. Unfortunately, the 

dysfunction especially if the chorea 

or movement disorder has not yet 

appeared or is the more subtle 

symptoms such as loss of fine motor 

coordination and the slowing of eye 

movements; 

•The belief on the part of the social 

security caseworker that the 

applicant and his or her symptoms 

will improve with treatment; 

•The relative youth of the applicant, 

especially for individuals applying in 

their thirties and forties; 

•The applicant’s lack of insight 

(which is a symptom of the disease 

itself) about the progression of the 

disease with the result that the 

affected individual is not able to give 

an accurate assessment of his or her 

condition to the caseworker; 

Last Spring, at the invitation of the 

Social Security Administration, HDSA 

offered its suggestions on how the Blue 

Book could be revised to better address 

Huntington’s Disease. Our suggestions 

have been well received and will be 

considered as part of SSA’s review of its 

neurological listings later this year. We 

hope that the changes, if finally 

implemented, would save time, money, 

resources and emotional energy on the 

part of the Social Security 

Administration and the individuals and 

families it serves who suffer with the 

effects of Huntington’s Disease. In the 

meantime, we will continue to monitor 

the progress of the neurological listings 

review. 

Suzanne Doggett, Esq. is a member of the 

HDSA national Board of Trustees and Chair 

of the national Advocacy Committee. 

21

CCA AR RE EGG I IV VE ER RS S ’ ’ L LI INN K K 

The progression of HD is 

always uncertain. It is 

impossible to forecast the 

level of help that one will need to 

maintain quality of life during the 

continuum of the disease. However, 

one can plan for an eventual need for 

assistance by investing in Long Term 

Care Insurance (LTC). LTC insurance 

evolved from Income Disability 

insurance. It is different from other 

insurance, because it focuses on coping 

with a person’s reduced level of 

functioning over an extended period 

of time, sometimes indefinitely. Long 

term care insurance helps to pay for 

assistance with the activities of daily 

living—bathing, continence, dressing, 

feeding, toileting, transferring, etc. 

Many people with HD are given 

loving care by family members and 

friends. But, depending upon how 

Planning Ahead with 

Long Term Care Insurance 

events unfold, that may 

be impractical or even 

impossible. It may be 

necessary to have in-home 

assistance, move into an 

assisted care facility or 

ultimately, into a nursing 

home. All of these options 

can be very costly. Home 

care can cost $15 to $50 

an hour. A private studio apartment in 

an assisted-living facility averages 

about $27,000 a year and the average 

national cost of a nursing home stay is 

$54,900 a year. Medicare will only pay 

for up to 100 days in a nursing home if 

you qualify at all, and will only pay for 

certain types of skilled care in your 

own home. 

Long term care insurance can help 

preserve financial independence and 

dignity. The policyholder chooses the 

settings for care (home or a facility), 

the maximum daily benefits (typically 

$50 to $250/day), the benefit period 

(for 2,3,4,5 years or life) and the 

elimination period (how long before 

the policy ‘kicks in’). The cost of 

LTC insurance varies widely 

depending on the type of benefits 

desired, as well as the age of the 

person at the time the policy is 

written. The earlier the policy is 

purchased, the lower the premiums. 

There are issues regarding long term 

care insurance that are specific to 

people at risk for HD. Since you must 

medically qualify for coverage, it may 

be easier to obtain LTC insurance 

prior to undergoing testing for the 

HD gene. It may also be wise to 

purchase a policy with an unlimited 

benefit period. In fact, choosing the 

right coverage can be complicated. 

You may want to consult your State’s 

Health Insurance Counseling and 

Assistance Program 

(http://hiicap.state.ny.us/home/ 

link08.htm) for unbiased advice. 

They can help you to make certain 

that the actual coverage is what the 

policy owner expects and that the 

insurance company is financially 

strong and reputable. 

The following sources were consulted for this 

article: Rose Clayton, a licensed long term care 

insurance agent of General Electric Capital 

Assurance Company, clayton@socal.rr.com; 

the Long Term Care Insurance Buyer’s 

Advocate website, http://www.ltcibuyersadvocate.com; 

and the HDSA Center of Excellence 

at the University of Virginia, 

http://www.healthsystem.virginia.edu/ 

internet/huntdisease 

22

Talking Technology 

Losing the ability to communicate 

is one of the tragedies of HD. 

The struggle to understand the 

words of a loved one can be 

heartbreaking to family members 

and friends. While tools such as 

the ‘picture board’ have been used 

for years to help HD patients make 

themselves understood, a picture 

board cannot express abstract 

thoughts or replace the spoken word. 

Using computer technology, 

augmentative and alternative 

communication devices (AAC), 

can give a voice to people in the later 

stages of HD, helping them make their 

needs and wishes understood and 

reducing frustration and isolation. 

Some of the newest systems are so 

small and light that they can be 

attached to a wheelchair. They run 

off computer laptop batteries and can 

be accessed by switches, a computer 

mouse, a keyboard or a built in 

touchscreen. Some systems store more 

than words and phrases and may also 

give the patient access to photographs, 

documents, games and email. 

The greatest benefit of these 

enhanced systems is their flexibility 

and customization possibilities. The 

manufacturers will customize sentences 

and phrases that the patient uses all 

the time. It is possible for users to 

type words into the system and also to 

add phrases. Another advance is in 

the variety of computer voices that 

are available. 

The systems are costly and can range 

from a few thousand dollars to over 

ten thousand. However, in 2001 after 

years of lobbying by activists, it was 

determined that Medicare would pay 

for AAC devices. Previously, these 

tools were seen as ‘inconvenience 

items.’ Today, an AAC is considered a 

Durable Medical Device (DMD) or a 

prosthetic device. 

In order to ensure payment or 

reimbursement for an AAC device, 

it is necessary to work with a speechlanguage 

pathologist when selecting a 

communications system for a patient 

with HD. The speech-language 

pathologist can complete the AAC 

Evaluation and Funding Justification 

form that is required by Medicare. 

It is wise to introduce an AAC early in 

the continuum of HD, while the 

patient is still willing and able to adopt 

a new way of communicating. The goal 

is to reduce frustration, not create it. 

It has also been reported that some 

AAC devices must be purchased before 

a person enters a nursing home, in 

order for Medicare to consider payment. 

Beyond the payment paperwork, there 

are choices to be made in the type and 

complexity of the AAC device desired. 

The needs and abilities of the patient 

must be considered, as well as the level 

of training needed for the caregiver to 

maintain the system and make changes 

to the words and phrases. The benefits 

are surely worth the effort, because an 

AAC system can keep the windows of 

communication open between HD 

patients and the world. As one of 

our HD family members said, “These 

machines are good for the spirit of 

the HD patients as they are able to 

continue to express abstract thoughts 

and ideas.” 

23

24 

Meet Us In St. Louis Missouri for the 

Nineteenth Annual HDSA Convention! 

Make your plans now to join your HD 

friends and families at the annual HDSA 

Convention that will be held at the 

Adams Mark Hotel from June 11-13, 

2004. This year promises to be even 

better with more workshops, sharing 

and caring sessions and trend setting 

Care and Cure Forums. 

The 2004 theme, Reaching for Excellence 

in Care and Cure, reflects the advances 

that have been made in the care and 

cure of HD while recognizing the need to 

move forward toward our ultimate goal – 

a cure for this devastating disease. 

The convention will kick off on Friday 

morning with a traditional opening 

ceremony hosted by HDSA’s St. Louis 

chapter, followed by HDSA’s Focus on the 

Family Care Forum which will examine 

care issues along the continuum of HD. 

A panel will discuss the importance of 

exercise, nutrition, retaining speech and 

living positively in the early to mid 

stages of HD in order to maintain the 

best quality of life possible as you enter 

the latter stages of the disease. 

Immediately following lunch on your 

own, HDSA will offer a variety of 

workshops including advocacy training, 

methods for alleviating stress, Medicare 

eligible augmentative communication 

devices, as well as favorite topics from 

past conventions. A Friday evening 

reception will offer our HDSA families 

and friends an opportunity to renew old 

acquaintances while the HDSA National 

Youth Alliance presents a talent show. 

Saturday will be another action packed 

day beginning with the HDSA Research 

Forum that will focus on therapeutics 

and the research avenues that the 

Coalition will be taking as it re-organizes 

for the next phase of advancing HD 

research. Saturday afternoon once again 

offers a wide choice of workshops and 

support sessions. The Saturday evening 

Generation 2000 Awards Dinner and gala 

is always a welcome event that 

recognizes HDSA leaders and 

volunteers. 

The nineteenth annual 

HDSA convention concludes 

on Sunday morning with a 

selection of round tables 

followed by a formal closing 

ceremony at 11 a.m. 

For more information about 

the 2004 HDSA convention, 

please contact the National 

Office at 800-345-HDSA 

extension 35 or visit the web 

at www.hdsa.org. 

A convention registration 

form is conveniently provided 

in this magazine. Please note the Early 

Bird registration discount. 

And also please note that registration 

to the HDSA Convention does not 

guarantee you a room reservation at the 

Adams Mark Hotel. You must call the 

hotel (800-444-ADAM) to make your 

own room reservation. Be sure to 

mention that you are attending the 

HDSA Annual Convention to ensure 

the discounted room rate. 

HDSA 2004 Annual 

Convention Registration 

Pricing (per person) 

Early Bird Special 

(postmarked by April 2, 2004) 

$150 (adult) 

$115 per adult (2 or more 

adults/family) 

$75 National Youth Alliance (NYA) 

$80 Non-NYA (children 18 & younger) 

Full Registration 

(postmarked April 3 and before 

May 28, 2004) 

$170 (adult) 



$75 NYA member 

$80 Non-NYA member 

Late or On-Site Registration 

$225 (adult) 



$75 NYA member 

$80 non-NYA member 

Either Friday or Saturday Sessions 

(does not include Generation 2000 

Gala) 

$80 per person 

Generation 2000 Gala only 

$65 per person 

Adams Mark Hotel Pricing: 

$115 per night plus applicable tax 

(single, double, triple or quad) 

Note: cut off date for hotel 

reservations is May 19, 2004 

Cancellation policy: see registration 

form included in this magazine.

progress report 

Living At-Risk 

Preimplantation Testing: An Update 

Note: This article is published for information purposes alone and in no way 

suggests that HDSA promotes the technology described. 

Preimplantation Genetic Diagnosis http://www.geneclinics.org/, a website 

(PGD) allows people at-risk for HD to administered by the Children’s Health 

know that their children will be born System and the University of 

free of the HD gene. PGD is performed Washington, Seattle and funded by the 

as part of an in vitro fertilization 

National Institutes of Health, Health 

process. It is a way to eliminate HD Resources and Services Administration 

from a family line forever. However, and the US Department of Energy. 

there are ethical dilemmas surrounding 

An exciting new development in the 

both in vitro fertilization and 

field of PGD is Non-disclosing 

preimplantation genetic testing, due 

Preimplantation Diagnosis of HD, which 

to the need for multiple embryos to 

allows those at-risk to remove the risk 

produce one live birth. Some people 

of HD from their family line without 

feel that the opportunity to give their 

having to know their own genetic 

child a life free of the shadow of HD is 

status. The need for non-disclosing 

worth it. 

diagnosis is multi-faceted. Many at-risk 

In a story published in the HDSA people do not want the burden of 

Research Update 2001 issue of The knowing their genetic status and they 

Marker, a Florida couple chose 

may have a well-founded fear of being 

preimplantation genetic testing as part denied insurance if the test for HD 

of their in vitro fertilization process comes back positive. The decision to 

because of a diagnosis of HD in the choose PGD to protect offspring from 

husband’s family. Their efforts were HD carries enough dilemmas for at-risk 

successful and their child was born free parents, without the added burden of 

of HD. At that time, only four centers having their own genetic status 

in the country routinely used PGD, revealed. Currently, the non-disclosing 

which can also test for other genetic test is available only at the Genetics & 

diseases, including cystic fibrosis, IVF Institute in Fairfax, VA, but it is 

hemophilia and Down’s syndrome. hoped that other genetic testing 

Today, there are many fertility clinics facilities will follow their lead. HDSA 

and genetic testing centers which invites you to be an advocate and work 

perform preimplantation genetic testing to protect the medical privacy rights of 

as part of the in vitro fertilization all people with HD (see page 27). 

process. A list of preimplantation 

genetic testing centers across the 

country can be found on 

IN VITRO FERTILIZATION (IVF) 

AND PREIMPLANTATION TESTING 

In vitro fertilization is a procedure where 

the union of egg and sperm occur in the 

laboratory and the resulting embryo is 

implanted into the uterus of the birth 

mother. Typically, ripe eggs are 

harvested after a course of fertility 

drugs, which encourage the body to 

produce more than one ripe egg. The 

eggs are placed in culture medium prior 

to fertilization. Not all fertilization 

attempts are successful and not all eggs 

then mature. If fertilization is successful, 

implantation is performed in three days. 

Between fertilization and implantation, 

genetic tests may be performed and 

embryos selected for implantation that do 

not show the presence of the HD gene. 

Once the embryo(s) are implanted, 

another course of hormones is given to 

increase the chance for a successful 

pregnancy. Since 1985, a little over 15% 

of implanted embryo procedures 

performed in IVF clinics have resulted in 

clinical pregnancies. HDSA recognizes 

that choosing IVF and preimplantation 

testing is a complex personal decision 

and offers the information so readers 

may reach an informed decision. 

25

progress report 

Living At-Risk 

HDSA to Honor Representative 

Louise Slaughter for Advocacy Efforts 

On Thursday, March 4, 

HDSA will pay tribute to 

Representative Louise 

Slaughter (D-NY) for her tireless efforts 

to protect millions of Americans from 

genetic discrimination. Rep. Slaughter 

has been instrumental towards introducing 

legislation that will protect 

Americans from genetic discrimination 

in the work place and by health insurance 

carriers. Since Representative 

Slaughter began her efforts, the 

Huntington’s Disease Society of 

America has been a steadfast supporter 

of Rep. Slaughter and the Genetic 

Nondiscrimination Act. 

To thank her for reaching out to those 

who are threatened by hereditary 

diseases, and for working towards 

instituting legislation that will protect 

all of us from threats to our livelihood 

and care plans, HDSA applauds and 

thanks Rep. Louise Slaughter with a 

‘Giving A Voice to HD’ Award. 

HDSA also recognizes leading Senators 

who, in November 2003, were active 

in moving a Senate version of the 

legislation to the floor for a successful 

vote (S.1053). HDSA thanks Senators 

Edward Kennedy (D-MA), Tom Daschle 

(D-SD), Tom Harkin (D-IA), 

Christopher Dodd (D-CT) and Alan 

Specter (D-PA). 

It has been a fight however, to bring this 

legislation to the floor of the House for a 

vote. House leaders have been trying to 

keep discussion of the bill in Committee 

thus making it doubtful that legislation 

will pass this year. As of early February as 

this magazine when to print, Rep. 

Slaughter was stepping up pressure on 

republican representatives through 

voluntary health organizations like 

HDSA while soliciting key holdouts to 

support bringing the bill forward for a 

vote. HDSA also recognizes Rep. Bob 

Ney (D-OH) for his efforts to garner 

House support. 

The guarantee of protection from genetic 

discrimination in the workplace and in 

health insurance cannot be understated. 

Many individuals at-risk for HD have 

elected not to be tested because they 

fear that a positive result will adversely 

impact their opportunities for 

employment and for low cost health 

insurance. With the advent of legal 

protections, it is hoped that many in the 

HD community will avail themselves of 

the advances made in genetic testing. 

If you would like to thank Rep. Louise 

Slaughter for her efforts to protect millions of 

Americans from genetic discrimination, you 

may send your letter to: 

Hon. Louise Slaughter, 2469 Rayburn House 

Office Bld., Washington, DC 20515. 

Become an HDSA Advocate! 

Your voice CAN make a difference in Congress! You can join 

HDSA’s growing list of advocates and give your voice to 

important issues that affect HD families and others with 

neurodegenerative diseases across the nation. In 2003, HDSA 

took an active role in genetic nondiscrimination legislation, 

federal funding for NIH/NINDS, and redefining HD for the 

Social Security Administration. This year promises to be even 

more active – and now is the time to be added to the HDSA 

list serve. 

And please indicate whether you wish to continue receiving 

HDSA publications like The Marker and Toward a Cure. 

Complete the form at right and return it in the envelope 

provided. 

❑ I want to continue receiving The Marker and Toward a Cure 

❑ Remove my name from the HDSA mailing list 

Your Name 

Mailing Address 

City State Zip 

Phone 

Email 

Please be sure to include your e-mail so we can alert you to 

important bills in Congress. 

27

In Loving Memory of DON KING, PH.D. 

On February 16, 2004, 

HDSA bid farewell to an 

extraordinary man who had 

dedicated himself to the care and cure 

of HD. His departure will leave a void 

that will resonant throughout the HD 

community. Those of you who attended 

HDSA annual conventions from 1999 

to 2003 were privileged to meet 

HDSA’s Chairman of the Board, Dr. 

Don King. Those who were fortunate 

to work with him during his years as a 

“volunteer” for HDSA will remember 

his kindness, his vision, and his 

absolute belief in a future free of 

Huntington’s Disease. 

Don King was first named HDSA’s 

Chairman of the Board in 1999. During 

his tenure he presided over the greatest 

expansion in HDSA’s history. No part 

of the mission statement was left 

unanswered or unimproved. The reorganization 

of the Society under 

Don King created a leaner and more 

talented organization that was 

better prepared to adapt to the rapid 

advancements in the care and cure of 

HD. Our 

research program 

and support for 

families is 

unparalleled by 

any other HD 

organization in 

the world and 

much of this 

accomplishment must rest in the vision 

that Don King had for the Society. 

In just four short years under Don’s 

leadership, HDSA’s commitment to 

research grew from $2.1 million to 

more than $3.5 million and 40 HD 

researchers worldwide. In 1999, HDSA 

had six HDSA Centers of Excellence 

for Family Services. Today there are 

seventeen major medical facilities 

across the country that carry that 

designation and, by the end of 2004, 

that number will increase to 20. 

Don King had a vision – one that 

promised a brighter future for those 

who lived “at risk,” for those affected 

by this devastating disease and for 

those who cared so lovingly for them. 

His leadership, strength of character 

and insight fostered a spirit of 

collaboration that brought together the 

diverse segments of the HD 

community. Today, thanks to the efforts 

of this one extraordinary man, we are a 

“family” working together towards one 

goal – a future free of HD. 

It is with regret that we bid farewell 

and say a final thanks to Don King, Ph.D. 

His memory will burn brightly in the 

hearts and minds of our HD families 

everywhere and with the staff with 

whom he worked so closely. 

Goodbye Don and thank you for all 

that you have done. 

HDSA has established the Don King 

Memorial Fund for Care and Cure. If you 

would like to make a donation today, please 

contact the HDSA National Office at 

extension 17. All gifts will be matched 2:1 

by the HDSA Research Matching Gifts 

Challenge Fund. Please consider making you 

donation today in memory of someone who 

gave so much to the care and cure of HD. 

Doctors Who Make House Calls 

Good news for those who cannot visit their primary care 

physician! The American Academy of Home Care 

Physicians (AAHCP), as a public service, has included 

on its web site, a list of member physicians who make house calls. 

Patients and family members who are searching for a physician to 

come to their home can now go to www.aahcp.org and click on 

‘Locate a Provider’ to access the physician database. Physicians 

are arranged first by state and then alphabetically (first name) 

within that state with zip codes served by that physician listed 

beneath their contact information. 

Not all physicians will be listed. Be sure to ask your physician or 

healthcare provider if they are aware of this service and whether 

they would like to become a member. 

Abridged and edited from Take Care!, Volume 10, Number 4, 

Winter 2003, with permission from the National Family Caregiver’s 

Association. For more information visit www.nfcacares.org. 

28

WIN A BMW And Help us Drive Toward a Cure. 

Another year is here and with it comes 

another chance to win big at the HDSA 

Driving Toward a Cure BMW 

Sweepstakes! This time, HDSA is 

excited to offer a grand prize of a 2004 

BMW 325 Ci Convertible or $25,000 

cash. Picture it. You, on a sunny 

afternoon, with the top down, with 

nothing between you and the bright 

horizon but the road ahead. Or imagine 

yourself $25,000 richer! We’re limited to 

2,500 tickets, (which means better odds 

for you), so be sure to call for yours 

today. And remember, for every two 

tickets that you buy or sell for HDSA, 

you receive a third ticket FREE. Tickets 

are $100 each (three for $200). Winners 

will be drawn at the 2004 HDSA Annual 

Convention in St. Louis on June 12 

during the Generation 2000 Gala and 

Awards dinner. Winners need not be 

present to accept their prize. 

All proceeds benefit HDSA research 

initiatives including the HDSA 

Coalition for the Cure, the Grant and 

Fellowship program and HDSA’s 

Therapeutic Initiative. Your donations 

will play an important role in curing 

Huntington’s Disease (HD) so please be 

generous. 

Additional prizes include: Second prize 

of $5,000.00 CASH, Third prize of 

$2,500.00 CASH, Fourth prize of 

$750.00 CASH, and a Fifth prize of 

$500.00 CASH. 

For more information or for additional 

tickets, please contact the HDSA 

National Office at (800) 345-HDSA or 

email hdsainfo@hdsa.org. You can also 

visit the HDSA national web site at 

www.hdsa.org to request your 2004 

Driving Toward a Cure Sweepstakes 

ticket today! 

HDSA would like to extend its sincerest 

thanks to BMW North America for helping 

to make this annual sweepstakes possible. 

HDSA Launches New Faces of Huntington’s Campaign! 

Last spring, HDSA began 

a new ad campaign that 

focuses on the Faces of 

Huntington’s. This new 

awareness effort uses real 

HD families to graphically 

depict the courage and 

determination of those 

affected by HD and the 

incredible and lasting love 

of their family. To date, two 

ads, featuring mothers and 

daughters - Jean and Kelly 

Miller and Shana and 

Debbie Martin- have appeared in regional issues of major 

national publications thanks to an ongoing in-kind gift from a 

major media placement firm. A third ad is in development that 

will address juvenile HD 

in a youth under the age 

of 10. 

All ads have been created 

at virtually no cost to 

HDSA through yet 

another generous in kind 

gift from three extremely 

talented individuals in the 

advertising industry. 

HDSA wishes to extend its 

sincerest thanks to both 

the media placement firm 

and to these very generous 

and creative individuals who have given HDSA a truly 

meaningful and very personal awareness campaign. 

29

WAYSW A Y S TOT O GIVEG I V E 

YOU CAN MAKE A DIFFERENCE 

The Huntington’s Disease Society of America supports an ambitious roster of 

initiatives aimed at advancing the care and cure of HD. Under the cure or 

research umbrella is HDSA’s flagship program, the HDSA Coalition for the 

Cure, as well as Grants and Fellows, the original Therapeutics Initiative and 

the new HDSA Drug Discovery Team. HDSA also supports other research 

projects such as the Huntington Study Group. Under the care initiative, HDSA 

supports the HDSA Center of Excellence program, educational opportunities 

such as state and national conventions, seminars and conferences, outreach 

efforts to increase awareness as well as providing regional referrals and services 

through chapters, affiliates and support groups. 

HDSA receives no direct federal or state support. Eighty-seven cents of every 

dollar contributed is used directly to fund programs to advance research and 

care. Those contributions restricted to a specific program or area go entirely to 

that project. There are many ways that you can help HDSA. Contributions 

may be made through the HDSA national web site at www.hdsa.org (click on 

“Ways to Give” and then select the program to which you wish to contribute). 

Or you may make a contribution by mail or by using HDSA’s toll free number 

800-345-HDSA. 

Please make your gift today and be as generous as possible. Help us to move 

our care and cure programs forward. Together, we can make this the last 

generation with HD. 

Generation 2000: 

Fulfilling the Promise, 

a New Challenge ($1.00 = $3.00!) 

Three years ago, HDSA launched 

phase two of Generation 2000: 

Fulfilling the Promise in an effort to 

raise $25 million for HD research over 

five years. Today, HDSA is well on the 

way to achieving that goal. To date, 

HDSA has raised more than $18 

million through the generosity of 

donors like you. To encourage you to 

donate today, HDSA has established a 

new Research Matching Gifts 

Challenge Fund that triples every $1 

contributed to HDSA so that $1 

becomes $3 donated to support 

HDSA-funded research. 

Every gift made, whether through a 

Family Fund, individual donation, 

tribute or memorial will be matched 

by the Research Matching Gifts 

Challenge Fund. This could result in 

an extra $1 million for HD research! 

Please consider making your donation 

today. 

HDSA Family Funds 

The HDSA Family Fund program was 

created to give family members and 

friends an opportunity to contribute 

more than each might have been able 

to individually. A Family Fund may be 

created to honor your family or to 

remember a loved one. With an annual 

gift, a Family Fund may sponsor or cosponsor 

part of HDSA’s Cure Initiative 

including an HDSA Coalition for the 

Cure investigator, a grant or fellowship 

recipient or partially support a research 

project. Family Funds may also be 

designated to support any part of 

HDSA’s Care Initiative including the 

HDSA Center of Excellence program, 

family services, educational 

opportunities, publications like The 

Marker, Family Guide Series or 

Handbooks. To create your Family 

Fund, please contact the National 

Office at extension 17. 

Cash and Pledges 

Charitable cash contributions and 

pledges provide significant tax 

benefits while supporting HDSA’s 

mission to fund research, provide 

support and services to our HD 

families and educate the public 

and our healthcare professionals 

about HD. 

Pledges may be made over a period 

of three years or longer and may be 

payable quarterly, semi-annually or 

annually. 

Tribute & Memorial Gifts 

Gifts made as a tribute or in memory 

of a loved one help HDSA to provide 

the financial support needed to 

advance the care and cure of HD. A 

personal acknowledgement is sent to 

the individual or family in whose 

honor the gift has been made and a 

separate receipt is sent to the donor 

for tax purposes. 

Stock, Securities or 

Real Estate 

Gifts of stock, securities or real estate 

provide tax benefits while avoiding all 

capital gains taxes. Gifts allow the 

donor to claim the current market 

value (not purchase price). 

30

Heritage Club 

Individual planned giving can be easy 

with HDSA’s Heritage Club. Use your 

will, trust or estate assets to make a 

contribution to HDSA while receiving 

valuable tax benefits. Please call 

HDSA’s National Office for more 

information about: 

■ 

■ 

■ 

■ 

Bequests (HDSA will be 

remembered in your will) 

Gifts of Personal Residence or 

Farms with a Retained Life Estate 

Life Income Gifts that include 

Charitable Gift Annuities, Pooled 

Income Funds or Charitable 

Remainder Trusts. 

Gifts of Insurance 

Corporate Matching 

Gift Fund 

Double or even quadruple your gift 

to HDSA by using your company’s 

matching gift program. To double your 

gift, simply include your employer’s 

matching gift form with your 

contribution. To really have your gift 

make a substantial difference, be sure 

to specify that both your gift and your 

employer’s matching gift are to be 

included in the Generation 2000 

Research Matching Gift Challenge 

Fund that matches 1:2. 

Community Health Charities 

If you give through the United Way or 

Combined Federal Campaign, please 

be sure to identify the Huntington’s 

Disease Society of America (HDSA) by 

using the number 0526 on your 

pledge card. 

HDSA M A R K E T P L A C E 

The HDSA Marketplace is going on its fourth year since its creation in 2001. Here you'll 

find a selection of items that will bring a smile to someone's face and help you make a 

difference in the fight against Huntington's Disease. 

BITES OF HEAVEN (50% OF PROCEEDS GO TO HDSA) 

The Huntington's Disease Society of America is proud to introduce a new way to make 

your friends and family happy while making a contribution to HDSA's efforts. Bites of 

Heaven is a supplier of sweet, old-fashioned nut brittle! It makes a wonderful gift for the 

holiday season as well as for every occasion. 

FTD.COM (15% OF YOUR PURCHASES GO TO HDSA PROGRAMS) 

FTD.COM and HDSA are a part of a floral Affiliate Program that allows individuals 

and/or companies to make a contribution to HDSA each time a floral purchase is made. 

15% of all proceeds go to HDSA's research, education and family service programs. 

Within the next five years alone, our commitment to research is expected to grow by over 

400% and FTD is committed to assisting us in making breakthroughs in treatment and a 

cure possible. 

MY NEW YORK (40% OF PROCEEDS GO TO HDSA) 

Kathy Jakobsen’s book is comprised of eye-catching paintings full of vitality and elaborate 

detail that bring the city to life as a young girl takes readers on a pictorial tour to 

meet her favorite animals at the Central Park Zoo, experience the sights and sounds of 

Chinatown at night, visit the Museum of Natural History where a barosaurus stands 50 

feet high, and watch the Christmas tree at Rockefeller Center go up...and up! Kathy 

Jakobsen’s unusual perspective and exuberant enthusiasm for New York makes this 

book a glorious celebration of the city that never sleeps. 

TRAVELOGIA.COM (35% OF PROCEEDS GO TO HDSA) 

TraveLogia.com is a full service online travel company that works with leading travel 

agencies around the world. They have partnered with HDSA to allow individuals and 

companies to make travel arrangements worldwide while contributing a portion of their 

purchase to HDSA programs. TraveLogia.com offers all major travel products, services 

and revenue opportunities including: 

■ 

■ 

■ 

■ 

Discounts on airlines, hotels, car rentals, cruises and tours 

Special upgraded features and amenities 

Exciting destinations both domestic & international 

Knowledgeable travel counselors 

GIFTCERTIFICATES.COM (5% OF YOUR PURCHASE GOES TO HDSA) 

Gift certificates are a popular way to give a gift to someone from your favorite merchant 

without the worry of size or selection. Certificates are available from a wide variety of 

local and national merchants and services, including stores like Bombay, J. Crew, 

Sharper Image, Blockbuster and Orvis, and are available in almost any denomination. 

31

continued from page 20 

6. Postpone important decisions until 

the depression has lifted. Before 

deciding to make a significant 

change discuss it with others who 

know you well. 

7. People rarely snap out of 

depression, but they can feel a little 

better each day. 

8. Remember, positive thinking will 

replace negative thinking as your 

depression responds to treatment. 

9. Let your family and friends 

help you. 

The most frequent treatment for 

depressive symptoms that have 

progressed beyond the mild stage is 

antidepressant medication which 

provides relatively quick symptom relief, 

coupled with ongoing psychotherapy, 

that can offer new strategies for a 

more satisfying life. A psychologist or 

psychiatrist can assess your condition 

and arrive at the treatment most 

appropriate for you. 

Respite care, positive feedback from 

others, positive self-talk and recreational 

activities are helpful in avoiding 

depression. Look for classes and support 

groups to help you learn or practice 

effective problem-solving and coping 

strategies needed for caregiving. For 

your health and the health of those 

around you, take some time to care for 

yourself. 

Reprinted with permission from Update, 

Fall 2002, published by Family Caregiver 

Alliance. For more information, visit 

www.caregiver.org. 

■ 

■ 

■ 

■ 

■ 

■ 

■ 

■ 

■ 

■ 

HDSA 

THANKS OUR 

2003 

CONVENTION 

SPONSORS 

Amarin Pharmaceuticals 

Astra Zeneca 

The Lederer Family 

The Robert Wood Johnson 

Foundation 

Bridgeway Funds 

The Cancelmo Family 

Pfizer Inc. 

Simmons & Company 

International 

Athena Diagnostics 

Prestwick Pharmaceuticals 

FTD.COM will donate 15% of your purchases to the 

Huntington’s Disease Society of America! 

We’re very proud to have been chosen to participate in a new HDSA Affiliate Program.Through special arrangement, each time you purchase 

beautiful gifts and floral arrangements at FTD.COM, we will donate 15% to HDSA’s research, education and family service programs. 

In the next five years alone, HDSA’s commitment to research funding is expected to grow by over 400%. 

We’re committed to helping to make breakthroughs in treatment and…a cure possible! 

It’s easy to make your purchase count! 

® 

Order at www.ftd.com/hdsa, order at www.hdsa.org, or dial 1-800-SEND-FTD 

TM 

and mention dept. 3015 when ordering. 

New Orleans Plays Host to Society for Neuroscience 

More than 28,000 neurologists from 

around the world flooded downtown 

New Orleans for Neuroscience 2003, 

the annual conference organized by 

the Society for Neuroscience. Held 

from Saturday, November 8 through 

Wednesday, November 12, this 

prestigious gathering brought together 

scientists of all ages dedicated to 

investigating issues surrounding the 

brain. 

Neuroscience 2003 provided an 

excellent opportunity for investigators 

working on a variety of 

neurodegenerative disorders, such as 

Huntington’s, Parkinson’s and ALS, to 

share the results of their research and 

discuss ways in which findings for one 

disease could significantly impact and 

benefit others. In addition, this five 

day gathering provided young scientists 

with an opportunity to learn more 

about the field of neurology and the 

exciting research options available. 

HDSA provided information about 

programs and services for Huntington’s 

Disease as well as distributed 

information about HDSA Grants & 

Fellowships available for 2004/2005. 

Of significant note, thirteen of HDSA’s 

17 Coalition for the Cure investigators 

were asked to present finding from 

recently published articles during the 

conference, many in the form of 

question-and-answer poster sessions. 

Of these thirteen, six were asked to 

give brief lectures on their study results, 

thus confirming not only the great 

respect held by HDSA Coalition for 

the Cure investigators by the 

neurological research community but 

also the importance of their work. 

32

34 

HDSA 

Huntington’s Disease Society of America 

158 West 29th Street, 7th Floor 

New York, New York 10001-5300 

212-242-1968 • 1-800-345-HDSA • www.hdsa.org

The Marker - 2004 - Huntington's Disease Society of America

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