helpfortoday - Huntington's Disease Society of America

HELPFOR TODAY. HOPE FOR TOMORROW.
h d s a . o r g
HDSA National Convention
Draws over 700 to Pittsburgh
By Barbara T. Boyle, National Executive Director/CEO
I’m pleased to report that from the moment the
University of Pittsburgh Marching Band Trumpet
Section paraded into the Grand Ballroom to kick
off the festivities, until the long good-byes at the
conclusion of the Sunday morning roundtable
discussions, the 23rd Annual National Convention
surpassed all expectations—from the number of
participants (over 700)—to the reaction to the
forums, workshops and other programs—and every
other aspect of the annual gathering.
The three-day event drew HD family members
from all parts of the United States. Attendees
were able to participate in the two large forums,
J U L Y 2 0 0 8
Family Care on Friday, and Research on Saturday,
and a host of workshops ranging from potential
new therapies, to caregiver training, to discussions
of Juvenile HD and many other topics, organized
into five “tracks” geared to the various stages of
HD, and other major themes. The jam-packed exhibition
center featured products and services of interest
to our families, and of course, the renewal of
old friendships and networking that is a major part
of the Convention, took place throughout the Omni
Penn Plaza Hotel, despite the 90+ degree temperatures
throughout the weekend.
(continued on page 3)
The The Traditional Candleof of Hope Ceremony completes an
eveningofof recognition and remembrance at the Convention Gala.
The Answers
Are Within Reach
(see page 5) 5)

HELPFOR TODAY. HOPE FOR TOMORROW.
H U N T I N G T O N ’ S D I S E A S E S O C I E T Y O F A M E R I C A
Marcy MacDonald
Three New Members Elected to
National Board of Trustees
The HDSA National Board of Trustees met twice
during the recent National Convention. The first
meeting was an open forum on Friday afternoon, an
opportunity for convention attendees to meet the
Trustees, and ask them questions. The meeting began
with introductions of each Board member, and how
they had become affiliated with HDSA. A spirited
round of questioning followed. The event was so
well-received that it is already on the agenda for next
year’s convention.
During the Saturday afternoon formal meeting
of the Board of Trustees, three new members were
elected: Steve Ireland, Marcy McDonald, Ph.D., and
Steve Seekins, MPA.
Steve Ireland is a Senior Systems Engineer,
with more than 30 years of experience in the technology
industry. He is well-known to many members of
the HD community through
his stewardship of two excellent
HD websites,
www.hdac.org and
www.hdlighthouse.org.
Steve Seekins is also
known to many members of
the HD community through
his work with the Southern
California Chapter. He is consultant
and former
Executive VP and CEO of
the Society of Critical Care
Medicine.
Marcy MacDonald,
PhD, will serve as the
Chairperson of the HDSA
Medical/Scientific Advisory
Committee (MSAC), and is a
founding member of the
HDSA Coalition for the
Steve Ireland
Cure. She is currently a Professor of Neurology at
Harvard Medical School and Director, Molecular
Analysis Module, of the Massachusetts General
Hospital Genomics Core Facility.
These new members are replacements for
Board Members whose terms have expired. We are all
grateful to James Gusella, PhD,
Charles Dimmler, III and
Brendan Condon for their years
of service and dedication to
HDSA.
In addition to the three
new members, new NYA
President, Cathy Harrell was
invited to join the Board as the
NYA Representative.
Steve Seekins
C. Walt Johnston -- Chair
Ridgefield, CT
Cheryl Kendrick - Vice-Chair
San Diego, CA
Jamie Greene, Esq. -- Secretary
Atlanta, GA
Roger Vaughan - Treasurer
Columbus, OH
Jang-Ho Cha, MD PhD - Chair of
CPEAC
Charlestown, MA
Marcy MacDonald, Ph.D. - Chair of
MSAC
Lexington, MA
HDSA National Board of Trustees
Leon D. Tibben -- Chair
NFC
Andover, MN
Donald L. Barr
Chesterland, OH
Diane Carlson
Summit, NJ
Gerald A. Francese, Esq.
New York, NY
Susan S. Huang
Greenwich, CT
Steve Ireland
Georgetown, TX
Barry Kahn
Lake Zurich, IL
Michael Roth
New York, NY
Steven Seekins
Burbank, CA
Kimberly Silva
Lincoln, RI
Daniel S. Vandivort
Riverside, CT

H U N T I N G T O N ’ S D I S E A S E S O C I E T Y O F A M E R I C A
Pittsburgh Convention a Great Success
The University of Pittsburgh Marching Band Trumpet Section
Heralded the Opening of the 23rd Annual Convention.
(continued from page 1)
Even before the opening
ceremonies on Friday morning, we
had already completed two days
of extensive workshops: On
Wednesday, the entire HDSA Field
Staff met for training sessions and
workshops; and on Thursday, our
annual Leadership/Professional
Training day, attended by Chapter
Leaders and all HDSA Social
Workers, was augmented by
the first annual National Youth
Alliance (NYA) Training day, in
which our future leaders met
to take part in workshops and
discussions on topics ranging
from HD Research and Genetic
Testing, to fundraising and
organizing skills. Our thanks
to Don Barr, and to Jean
Miller and Susie and Dave
Hodgson for their leadership
in making this event a reality.
I’m very pleased to announce
that thanks to the the leadership
of Don Barr, and the generosity
of several HDSA chapters,
we were able to award 27
scholarships to NYA members,
making it possible for them to
attend this special event. I hope
that more chapters will consider
adding NYA scholarship donations
to their budgets next year, as the
future of HDSA rests with this talented
and motivated group.
The NYA broke new
The Exhibit Hall was a
busy place during
breaks between
workshops.
ground during the convention
as well, voting to become a
virtual chapter of HDSA, and
selecting its leadership. The
new NYA president, Cathy
Harrell, will sit on the
National Board of Trustees.
After the opening ceremonies,
an outstanding Focus
on the Family Forum took
place, moderated by Elizabeth
Gettig, PhD, CGC, of the
University of Pittsburgh. On
the panel with Dr. Gettig,
were Wanda Wilson (caregiver),
Alex Andres (at risk), Bill
Drum (Person with HD) and
Peggy Polito (social worker),
who discussed a wide-ranging
set of topics of relevance to all
families confronting HD. We are
grateful to these panel members,
as well as to all convention participants,
for taking the time to
speak so forthrightly about their
experiences.
The afternoon workshops
(continued on page 4)
HELPFOR TODAY. HOPE FOR TOMORROW.

HELPFOR TODAY. HOPE FOR TOMORROW.
H U N T I N G T O N ’ S D I S E A S E S O C I E T Y O F A M E R I C A
The NYA broke new
ground, electing a slate
of officers and becoming
a virtual chapter..
(continued from page 3)
drew huge crowds, in some cases causing the staff to
seek and find larger venues, to accommodate the
overflow.
After the workshop sessions on Friday, the
National Board of Trustees held a question and
answer session, which was open to all convention
attendees.
This was followed by the annual NYA talent
show, during which the group raised over $14,000.
Over 700 attendees filled the
main floor and mezzanine of
the Grand Ballroom
Saturday morning kicked off with the HDSA
Research Forum. A packed ballroom listened to Jim
Gusella lead a discussion of the promising state of HD
research. Dr. Gusella presented the HDSA Drug
Research Pipeline, and the work of the HDSA
Coalition for the Cure in the first phase of the
pipeline, basic research. Dr. Celia Dominguez, Vice
President of Chemistry, CHDI Inc. outlined the 40
potential therapeutic approaches that are being followed
in the translational phase of the Pipeline. Then
Dr. Dan van Kammen, Chief Medical
Officer of CHDI, Inc. described the
process of bringing a potential therapy
to a clinical trial, what the FDA
is looking for and how the three
phases of trials differ. The feeling in
the room was one of optimism, as it
was evident that there is progress
being made, and there are several
potential drug candidates that will
are moving towards Phase III Clinical
trials in the very near future.
After another afternoon of
workshops and presentations, everyone
gathered for the gala festivities,
featuring awards to chapter individuals
who have made outstanding
contributions to the Society during
(continued on page 7)

H U N T I N G T O N ’ S D I S E A S E S O C I E T Y O F A M E R I C A
With over 40 potential therapeutic approaches in
the HDSA Drug Pipeline, 21 Centers of
Excellence providing medical psychiatric and social
services, and over 200 support groups facilitated by
the 38 HDSA Chapter and affiliates, there is reason
to believe that the answers we are all working to find
are truly within reach.
To get those answers we need to maintain and
expand our programs of research and care, so that our
scientists and clinicians can complete their work.
Therefore, at the 2008 National Convention,
a new capacity campaign, The Answers Are Within
Reach, was introduced.
The objective of this campaign is to raise at
least $3 million over the next 3 years to ensure these
crucial programs continue towards their goals.
Glenn Smith, president of the Los Angeles
Chapter, made the kick-off gift of $10,000 upon the
announcement, and then donated an additional
$5,000 challenge gift during the Saturday Evening
Gala. Motivated by this act, Gala attendees donated
over $5,000 at the dinner, to meet the requirements
of Glen’s challenge gift, and then Cathy Brown
donated an additional $10,000, and the Answers
campaign was officially under way.
Shortly after the Convention was over, Dorla
Mayer made a lead gift of $100,000, so we have
made an excellent start towards our campaign goal.
The theme of the campaign makes it an
excellent door-opener—a way to introduce
Huntington’s Disease and HDSA to friends and
colleagues: To showcase the work of the HDSA
Coalition for the Cure, CHDI and our Clinic Trials
partners; the breadth and depth of services of the 21
Centers of Excellence, now in their tenth year; and
the support groups and other services provided by
our Chapters and Affiliates. We have a strong story
to tell, as HDSA research is at the forefront of the
genetic/microcellular revolution, and the findings
being made are of benefit to scientists studying other
neurodegenerative diseases, including Parkinson’s,
Alzheimer’s and others.
So how can you help us reach those answers?
You can:
• Make a donation now!
• Speak to your employer about a
donation or a corporate matching
program
• Visit a local club (Rotary, Kiwanis, etc.)
and ask them to donate to HDSA
• Ask your local chapter how you can help
with their campaign activities
Details about the Answers Are Within Reach
campaign are available on the HDSA website at
www.hdsa.org/Answers. If you have any questions,
please contact Barbara Boyle (ext 216) or Leah
Donnelly (ext 218) at (212) 242-1968.
Please fill out
this form and
mail it to:
Answers
HDSA
505 Eighth Ave
Suite 902
New York, NY
10018
I am giving: $10,000 $5,000 $1,000 $500 $250 $100 $50 Other $
I am enclosing a check payable to HDSA
Please Charge this Amount to my: Amex Visa Mastercard Discover
I am pledging: *$ every months for a total of $ beginning
Please automatically deduct this amount from my :
*(minimum $25 per month)
Bank Account #
EIN#:
Credit Card Account
Credit Card # cvv# Exp. Date
Name on Card
Signature
Name:
Address:
City: State Zip
Email: Phone ( )
I am enclosing/processing my company’s Matching Gift Form (company name)

HELPFOR TODAY. HOPE FOR TOMORROW.
H U N T I N G T O N ’ S D I S E A S E S O C I E T Y O F A M E R I C A
Outstanding Newsletter
New England Region
Outstanding Family Services/Education Program
Kentucky Chapter
Best New Fundraising Event
St. Louis Chapter
Outstanding Fund Raising Event
Michigan Chapter
Outstanding Board Development
Delaware Chapter
Affiliate of the Year
Greater New York

HELPFOR TODAY. HOPE FOR TOMORROW.
H U N T I N G T O N ’ S D I S E A S E S O C I E T Y O F A M E R I C A
Chapter of the Year
San Diego Chapter
Giving a Voice to HD
Stanford HOPES Program
(continued from page 4)
the last year. A particularly emotional moment was the
naming of Bob Leck as HDSA Person of the Year, a
well-deserved honor to a man who has reached out to
support so many members of the HD community.
While the post-dinner dancing went on well
past midnight, many attendees gathered Sunday morning
for roundtable discussions, organized by topic of
interest and geographical areas.
I’m very pleased to report that the Convention
program was widely praised, and reviews of the individual
workshops have been very positive. I hope that
those of you who did get to attend will join us again
next June in Phoenix, and that those of you who did
not attend, will take the opportunity to join your fellow
HD community members at our 24th Annual
National Convention.
Powerpoint presentations from many of the
workshops are now available on the HDSA national
website. Videos of the Family Care Forum and the
Research Forum will be available in the near future.
I welcome any thoughts you may have on how
we may improve the convention, and hope to see you
in Phoenix next year.
Warm Regards,
Barbara Boyle
National Executive Director/CEO
HDSA Special Thanks (HDSA Documentary)
Liz Weber
HDSA Special Thanks (HDSA Documentary)
Documentary Team

HELPFOR TODAY. HOPE FOR TOMORROW.
H U N T I N G T O N ’ S D I S E A S E S O C I E T Y O F A M E R I C A
Juvenile HD Award
Jacey Mukka
HDSA Outstanding Fundraising Award
Marie Nemec and Charlotte Reicks
HDSA Research Award
Jane Paulsen and PREDICT_HD Investigators
HDSA Thanks for Convention Partnership
Western Pennsylvania Chapter
HDSA Patient & Family Services Award
HDSA Center of Excellence at Emory University
HDSA Board Leadership
James F. Gusella, Ph.D

H U N T I N G T O N ’ S D I S E A S E S O C I E T Y O F A M E R I C A
Awards Bestowed at 23rd Annual HDSA National Convention
June 7, 2008
HDSA Marjorie Guthrie Award
For Outstanding Service to the HD Community
ELIZABETH GETTIG, MS, CGC
HDSA Outstanding Fund Raising Award
10th Anniversary Bike for a Cure
MARIE NEMEC
National Awards
In Appreciation of Dedicated Board Leadership
CHARLES DIMMLER III
HDSA Thanks
WESTERN PENNSYLVANIA CHAPTER
For Your Partnership
HDSA 23RD Annual Convention
HDSA Person of the Year
For His Example to Others
Living with Huntington's Disease
ROBERT LECK
HDSA Giving a Voice to HD
STANFORD HOPES PROGRAM
HDSA Patient & Family Service Award
10th Anniversary Center of Excellence Program
HDSA CENTER OF EXCELLENCE
AT EMORY UNIVERSITY
Juvenile HD Award Given in
Honor of Kelly Miller
JACEY MUKKA
HDSA Research Award
JANE PAULSEN and
PREDICT-HD INVESTIGATORS
In Appreciation of Dedicated Board Leadership
JAMES F. GUSELLA, PH.D.
HDSA Thanks
University of Pittsburgh
Marching Band
HERALD TRUMPET SECTION
Opening Ceremony
HDSA Honors
RON NEMEC
10th Anniversary Bike for a Cure
HDSA Honors
CHARLOTTE REICKS
10th Anniversary Bike for a Cure
HDSA Thanks
LIZ WEBER
For Her HD Documentary
HDSA Thanks
HUNTINGTON’S DISEASE
DOCUMENTARY TEAM
In Appreciation of Dedicated Board Leadership
BRENDAN CONDON
Chapter of the Year
SAN DIEGO CHAPTER
Outstanding Family Services/Education Program
KENTUCKY CHAPTER
Outstanding Newsletter
NEW ENGLAND NEWSLETTER
Best New Fund Raising Event
ST. LOUIS CHAPTER
Chapter Awards
Outstanding Fund Raising Event
Lawn Mower Race
MICHIGAN CHAPTER
Outstanding Board Development
DELAWARE CHAPTER
Affiliate of the Year
GREATER NEW YORK
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HELPFOR TODAY. HOPE FOR TOMORROW.
H U N T I N G T O N ’ S D I S E A S E S O C I E T Y O F A M E R I C A
Robert Leck, HDSA Person of the Year flanked by
his son Samuel and HDSA National Board Vice
Chair Cheryl Kendrick.
Host Billy Aaron
Brown calls the
winner of the BMW
Sweepstakes.
Elizabeth Gettig, MS,
CGC hoists the HDSA
Marjorie Guthrie
Award received for her
Outstanding Service to
the HD Community

HDSA would like to thank the sponsors of
our 23rd Annual National Convention:

HELPFOR TODAY. HOPE FOR TOMORROW.
H U N T I N G T O N ’ S D I S E A S E S O C I E T Y O F A M E R I C A
HDSA Walk-a-Thon Program Is Growing
It’s fun, it’s an event everyone can participate in,
it’s a great way to raise funds and a simple way to
get your friends and colleagues involved with HDSA
—HDSA Walk-a-thons.
This year, HDSA is embarking on a 3-year
drive to expand our walk-a-thon program that
includes helping current walk-a-thons add more
participants and raise more money per participant;
and adding new walk-a-thons in areas where none
have been scheduled previously.
To lead this effort, HDSA has enlisted
Anthony Buffone of the Vizion
Group. Anthony was formerly
head of the walk program for
the Leukemia and Lymphoma
Society, and has over 15 years
of experience in
building successful walk
programs.
Anthony has helped us
focus on the creation of Walk
Teams, through places of
employment, schools, affiliated
organizations and family
groups, as well as working to enlist more local
sponsors, who will not only make donations, but
help us gain greater awareness for the walks themselves
and HDSA. Through the utilization of these
strategies (and others) our current walk-a-thon revenues
should increase significantly. As the program
grows, Anthony will be working with HDSA to
recruit potential national sponsors as well.
Aiding Anthony and his staff will be Shana
Martin, who has accepted the role of National Team
Walk Captain. Shana will be the “face” of the HDSA
walk-a-thon program, and will
be working with Anthony to
provide all walk-a-thon organizers
with recommendations
as to how they can create
more successful events.
For more information
on the Team Hope Walking
for HD program, please
visit www.hdsa.org/walks
or contact Mynelly Perez,
(212) 242-1968 ext. 214, or
mperez@hdsa.org.

H U N T I N G T O N ’ S D I S E A S E S O C I E T Y O F A M E R I C A
NeuroSearch announced on July 10, 2008 that the
United States’ Food and Drug Administration
(FDA) has approved the company’s Investigational
New Drug (IND) application for ACR16, a dopaminergic
stabilizer and a novel drug candidate for the treatment
of Huntington’s disease (HD). The IND application
approval allows NeuroSearch to initiate a planned
US study, named HART (Huntington's disease ACR16
Randomized Trial). NeuroSearch expects that the
HART study will begin in the second half of 2008.
ACR-16 is a small molecule belonging to a
pharmacological class called dopamine stabilizers. It
can enhance or inhibit activity depending on the initial
level. In other words, if dopamine activity levels are
too high, ACR-16 can decrease them, but if activity is
too low, ACR-16 can increase it. This contrasts with
neuroleptics where a reduction in activity of this neurotransmitter
occurs, regardless of initial level.
Dopamine is an important neurotransmitter
which plays a role in cognition, mood, attention,
learning, motor activity, sleep, and behavior, so targeting
it needs to be done carefully. Dopamine
appears to play a role in Huntington’s Disease.
Dopamine receptors are progressively reduced with
the progression of the disease. In addition, there is
some evidence that there is an abnormal sensitivity to
dopamine in the medium spiny neurons affected in
HD.
ACR-16 appears to work by strengthening
cortical control of the basal ganglia. The striatum,
which is part of the basal ganglia, is the brain's
autopilot. Once we have learned a behavior, we need
not give it our full attention. The striatum will control
the activity while our cortex is thinking about
something else. Once the striatum begins degenerating
in HD, the cerebral cortex loses control of the
basal ganglia. This is why HD patients have trouble
with multitasking.
ACR16 was previously evaluated in four clinical
Phase I/II studies with patients suffering from
Huntington’s disease, Parkinson’s disease and psychoses,
and demonstrated a good safety and tolerability
profile. In a Phase II study with ACR16 in
R E S E A R C H
FDA approves a Phase IIB clinical trial for ACR16 for HD Patients
Huntington’s disease, the results showed that 28
days’ treatment with ACR16 resulted in a statistically
significant improvement in the patients’ voluntary
movements including parkinsonism and gait function.
The HART study is planned as a randomized,
double-blinded and placebo controlled study expected
to include 220 patients. In the study, patients will
receive daily doses of either 22.5 mg (QD), 45 mg
(QD) or 45 mg (BID) ACR16 or placebo to evaluate
the efficacy and safety of ACR16 over three months’
treatment. The primary efficacy endpoint of this study
will be the effect of ACR16 on Huntington patients’
voluntary motor function (parkinsonism, gait/balance,
hand functionality, bradykinesia) measured by the
modified Motor Score, mMS - a subscale of the
Unified Huntington’s Disease Rating Scale (UHDRS).
Secondary endpoints include the overall clinical
impression of the patients, their cognitive function,
neuropsychiatric symptoms such as depression and
anxiety. The efficacy endpoints in the HART study are
the same as in the ongoing European MermaiHD
study.
Both the EMEA (European Medicines Agency)
and the FDA have granted ACR16 orphan drug status
for the treatment of Huntington’s disease.
ACR16 was discovered and is developed internally
by NeuroSearch, which has the rights to develop
and commercialise the compound for the treatment of
Huntington’s disease in the European Union, Norway,
Switzerland and North America. All other rights to
the compound have been outlicensed to Astellas
Pharma Inc.
Flemming Pedersen, CEO of NeuroSearch,
commented, “The FDA acceptance of our IND application
for ACR16 and of the protocol for the US HART
study is an important milestone for NeuroSearch.
With the European Phase III MermaiHD (Multinational
European Multicentre ACR16 study in Huntington’s
Disease) study ongoing, we now look forward to
completing our international development program
for ACR16 in the treatment of Huntington’s disease.
Currently, patients suffering from Huntington’s dis-
(continued on page 12)
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H U N T I N G T O N ’ S D I S E A S E S O C I E T Y O F A M E R I C A
No purchase necessary. No portion of “Bonanza” donation is tax-deductible. No responsibility is assumed for lost, late or non-delivered mail. Winners will be
selected in a random drawing on September 30, 2008. All prizes must be redeemed by December 31, 2008. You must ne 18 years or older and a resident
of the United States (except Puerto Rico). Employees of the Huntington’s Disease Society of America are not eligible. Winners will be notified by phone and/or
mail. Odds of winning are determined by the number of eligible entries received. Taxes are the sole responsibility of winners. Bonanza is subject to all federal,
state and local laws and regulations and is void wherever prohibited by law. Entry and acceptance of prize offered constitutes permission to use winner’s
name, photograph or other likeness for the purpose of promotion on behalf of the Huntington’s Disease Society of America, Inc., unless prohibited by law.
HELPFOR TODAY. HOPE FOR TOMORROW.

H U N T I N G T O N ’ S D I S E A S E S O C I E T Y O F A M E R I C A
Bi
FDA approves a Phase IIB clinical trial for ACR16 for HD Patients
(continued from page 10)
-ease have very limited treatment options. Bringing
this promising novel treatment concept to the market
to help alleviate the burden of a serious and very disabling
disease would therefore be a highly valuable
step forward for both patients and their relatives, as
well as for NeuroSearch as a company.”
References:
NeuroSearch Press Release
Dr. Joakim Tedroff’s talk at the 2008 HDSA convention
Wikipedia on dopamine
Charvin, D. , Vanhoutte, P., Pages, C., Borelli, E.,
Caboche, J. “Unraveling a role for dopamine in
Huntington's disease: The dual role of reactive oxygen
species and D2 receptor stimulation.” Proc Natl Acad
Sci U S A. 2005 Aug 23;102(34):12218-23.
Marsha L. Miller, Ph.D., July 10, 2008
A bill (H.R. 6259) to increase access to Social Security Disability and Medicare
benefits for people disabled by HD introduced in Congress
If passed, this bill, introduced by Rep. Bob Filner
from San Diego, CA, would require the Social
Security Administration to update the outdated medical
criteria in their disability listing for HD and obtain
a waiver for the 2-year Medicare waiting period for
people disabled by HD. Delays and unnecessary reapplications
for Social Security Disability Insurance, as
well as a gap in health coverage while awaiting
Medicare eligibility, are all too common for people disabled
by HD. This is an issue that affects everyone in
our community and we have just come one step closer
to bringing about much needed change!
As you may be aware, our HDSA advocacy
team has been working with advocates throughout
the country in the past months in an attempt to gain
a sponsor for this valuable piece of legislation, and
our efforts have paid off! HDSA would like to recognize
all of our advocates who contacted their
Representatives asking for support for this bill. We
would like to especially recognize our HDSA San Diego
Advocacy Team (among them Allan Rappoport, Misty
Oto, James Saint Onge, Sharon Shafer, Nathan
Wauthier, Luanne Bas, Jack Berkman and Bill
Johnston) for their dedication and persistence.
What can you do now? Ask your Representative
to sign on as a co-sponsor! We need as much
support as possible to see that this bill becomes law.
For more information on how to do this, please visit
the current initiatives link on the advocacy page of the
national website at http://www.hdsa.org/living-withhuntingtons/advocacy/current-initiatives.html
You can also visit:
http://www.govtrack.us/congress/bill.xpd?bill=h110-
6259 for more information on the bill.
The
Pacin’
Parson
Walks for
HDSA
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HELPFOR TODAY. HOPE FOR TOMORROW.
H U N T I N G T O N ’ S D I S E A S E S O C I E T Y O F A M E R I C A
HDTrials.org is Launched
Anonymous Clinical Trial Recruitment Website
With the promise of new clinical trials on the horizon,
there will be a greater need for participants than ever
before. With this concern in mind, representatives of
several different HD organizations have come together
to create an anonymous recruitment site, that will
notify people from the HD community about clinical
studies and clinical trials that will be taking place in
their locale.
HDTrials.org was designed to make registration
as simple and as private as possible—the only
information required is an email address and a zip
code or postal code (in Canada).
When investigators need volunteers for
an approved clinical study or trial, HDTrials.org
registrants (in that geographic area) receive an email
with information on how to contact the investigator.
If you have family members or friends who do
not use email, you may register them (with their zip
codes) through your own email address. Then you will
be sent an email with notification of trials in their
area as well, with the hope that you will pass on the
information to them. HDSA staff members have
worked with members of the Huntington Society of
Canada, HDLighthouse, HDAC, HDDrugworks, and
clinical investogators to create this site. It is hosted
separately from HDSA servers and databases to
maintain the privacy of all who register. For more
information on HDTrials.org, visit the website, or
send an email to info@HDTrials.org