National Marfan Foundation Annual Report 2008

National
Marfan
Foundation
Annual
Report
2008

The National Marfan Foundation (NMF),
founded in 1981, is a non-profit voluntary
health organization dedicated to saving lives
and improving the quality of life for individuals
and families affected by Marfan syndrome
and related disorders.
The Foundation accomplishes these goals
through:
Research
Promoting research to improve diagnosis and treatment and to find
a cure through:
• A grant and fellowship program for all Marfan-related disciplines
• Medical and scientific symposia
• Advocacy for federal funding and policies that support the
NMF mission
• Partnerships with government agencies and other voluntary
health organizations
Education
Providing accurate and up-to-date information about Marfan
syndrome and related disorders to:
• Patients and families
• Health care professionals
• The general public
Support Services
Helping individuals and families with Marfan syndrome and
related disorders through:
• The NMF Information and Resource Center, which provides
access to personalized service through a toll free hotline,
800-8-MARFAN, and email
• The National Volunteer Network, consisting of chapters,
network groups, support groups and individual volunteers,
which carries out the NMF mission at the local level
• The NMF Annual Conference
• The NMF newsletter, Connective Issues, and website,
www.marfan.org
Cover photo: Sydney Lerman, 6, daughter of Barbara and Jonathan Lerman,
Chappaqua, NY. Credit: Rick Guidotti

Dear Friends,
We are proud to share with you the National Marfan Foundation’s 2008 Annual Report,
a snapshot of our accomplishments of the past year and the impact they had on the
Marfan syndrome and related disorders community.
In 2008, there was unprecedented excitement in the scientific community about Marfan
syndrome research that began with the identification of a new Marfan target, TGF-beta,
and, in turn, possibilities of new therapeutic treatments. The NMF played a leading
role as the catalyst and as a funding source in major studies related to losartan, a new
potential weapon in the treatment of Marfan syndrome: the clinical trial on the impact
of losartan vs. atenolol on the Marfan aorta and two ancillary studies that maximize the
opportunity of this trial by conducting more research on people in the clinical trial
study population.
Additionally, the NMF is committed to a multi-center prospective study comparing the
outcomes of aortic replacement and aortic valve-sparing surgery. We are dedicated to
funding and promoting this research because the outcome will directly affect the quality
of life and length of life for the Marfan syndrome community.
The excitement in the Marfan community about the potential research breakthroughs was
reflected by the coverage in the media which, subsequently, brought more widespread
attention to Marfan syndrome and possible advances that could help a broader population.
And as we brought the news to our own community, it created an atmosphere of hope
and optimism, along with a groundswell of commitment to the NMF and its programs
of research, education and support.
The cost of research is greater than any other program the NMF initiates. With this
knowledge, the Foundation aggressively raised monies over the past several years to fund
these life-saving projects. This year, as the momentum of the clinical trial and aortic
surgery research increased and the ancillary studies launched, the Foundation’s research
expenditures soared. As a result, the NMF experienced a deficit, but it is significant to note
that this deficit was substantially financed from funds that had already been received for
these programs.
As the research has expanded our hopes and our dreams for the future of people with
Marfan syndrome and related disorders, we have remained committed to our other core
programs of education and support, continuing to find new ways to meet the very real
and often challenging day-to-day needs of those who are affected and their families.
This annual report highlights the tangible results of our efforts and, in the words of our
members, describes how we have truly impacted lives.
We appreciate your confidence in our organization and thank you for your support as
we work towards a cure.
Jon Tullis, Chair Carolyn Levering, President & CEO
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Research
The NMF’s steadfast commitment to research on Marfan syndrome
and related disorders held strong in 2008, with more than $1 million
awarded for critical research studies that will help diagnose and treat
Marfan syndrome and its complications. This includes support for
two major multi-center studies that have the potential of changing
the course of Marfan syndrome treatment in the future.
The Marfan community continues to be focused on the clinical trial,
Atenolol vs. Losartan in Patients with Marfan Syndrome—funded by
the National Heart, Lung, and Blood Institute—which is examining
the impact of two medications on the fragile aorta of Marfan patients.
It is a priority for the NMF to promote this trial so that the enrollment
target (604) can be reached. In 2008, eight new enrollment sites
were added—bringing the total number to 26—making it easier for
patients in different geographic areas to participate. During 2008,
enrollment increased from 186 to 352, helped by the new sites and
the NMF’s publicity efforts and scholarship program for people who
need financial assistance for travel to trial sites.
The aorta is also the focus of the second major multi-center study
currently in process. In the study, Aortic Valve Operative Outcomes
in Marfan Patients, researchers are comparing the results of two types
of aortic surgery: valve replacement surgery and valve-sparing surgery.
There were 71 additional patients enrolled this year, bringing the total
to 234. Early results of the study were presented at the 88th Annual
American Association for Thoracic Surgery meeting in May. The
research is ongoing as more work is needed to compare the durability
of the two procedures and the long-term results.
In 2008, the Foundation’s traditional research grant program awarded
grants to:
Robert P. Mecham, PhD, Washington University, for research into
tissue development and repair in Marfan syndrome that will provide
a better understanding of the variable traits associated with Marfan
syndrome and insights into better therapies (two-year, $100,000
award).
Hiromi Yanigisawa, MD, PhD, University of Texas Southwestern
Medical Center, for research that will increase understanding of the
molecular causes of Marfan syndrome through study of the Marfan
mouse model (one-year, $50,000 award).
Jennifer Pardo Habashi, MD, Johns Hopkins Hospital, for research
that looks at the impact of three medications on the aorta of mice
engineered to have Marfan syndrome (one-year, $50,000 award).
Ami Bhatt, MD, Brigham and Women’s Hospital, for research on
losartan and atenolol in adults with Marfan syndrome (two-year,
$150,000 Victor McKusick Fellowship).

Two of our three children,
Eliza, 2, and Phoebe, 4, have Marfan syndrome. Our
daughters are at least the fifth generation in our family
with Marfan syndrome. When I was a child, my mom was
dedicated to getting the best treatment for my sister and
me. This set the stage for our decision to put our two
children in the losartan vs. atenolol clinical trial at Salt
Lake City Pediatric Hospital. By doing this, we can create a
better future for our children and their children. We can’t
learn how to overcome the issues of Marfan syndrome
if people don’t collectively get together, be included in
research processes, and do
their part to help advances
in modern medicine. Our
family is grateful to the
NMF for giving us this
opportunity to contribute
in a way that will help us
and others with Marfan
syndrome for generations
to come.
James Jonas
Longmont, CO
Briana, 7, Eliza, 2, Phoebe, 4, Jonas
of Longmont, CO
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Advocacy &
Government
Relations
The NMF provides a voice for the Marfan syndrome and related
disorders community in Washington, DC, raising awareness as legislators
are making decisions about funding for the government agencies
that are involved in research and public health issues.
This year:
The results of a working group convened by the NMF and the
National Heart, Lung, and Blood Institute (NHLBI) on research on
Marfan syndrome and related disorders were published in the journal,
Circulation. The publication featured opportunities for advancing the
research agenda and specific recommendations for NHLBI.
The NMF again participated in Lobby Day, a high-impact, in-person
opportunity to meet with various congressmen. The NMF contingent
went to the nation’s capital to promote our work with the National
Heart, Blood, and Lung Institute, National Institute of Arthritis
and Musculoskeletal and Skin Diseases and Centers for Disease Control
and Prevention and request that the government include financial
support for these agencies in the coming year’s budget.
The NMF’s ongoing presence at the Social Security Administration
paid dividends in 2008. Following a presentation to the SSA in
December 2007, the Administration initiated the process of revising
its disability criteria for Marfan syndrome in both children and adults.
It also issued a Notice of Proposed Rulemaking seeking comment on
revisions to the medical criteria used to evaluate cardiovascular disorders.
The NMF has provided input recommending changes that would
positively impact Marfan syndrome patients.
The passage of the historic bill on genetic information nondiscrimination
marked a significant milestone for the NMF community. As part of the
Coalition for Genetic Fairness, the NMF has worked for thirteen years
toward the passage of legislation to eliminate the misuse of genetic
information. The Genetic Information Nondiscrimination Act, passed
in the spring, prohibits health insurance companies and employers
from discriminating against people on the basis of genetic test results.
It is significant for the Marfan and related disorders community because
it encourages Americans to undergo testing necessary for early diagnosis
and treatment of genetic-based diseases.

As a parent of a young man with Marfan
syndrome, I have struggled through the years because
there is not a lot of understanding of this condition. I have
worked hard locally to increase awareness and carry out
the NMF’s mission in my region. Having the opportunity to
bring my experience to Washington and speak on behalf of
the Marfan community took my volunteer work to a whole
new level. Telling my Marfan story to legislators in DC was
so empowering. It showed me how I could really make an
impact with those who make decisions about government
spending.
Teri Dean
Pleasant Hill, IA
Teri Dean, Pleasant Hill, IA, and
Senator Tom Harkin (D-IA)
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Education
& Public
Awareness
Medical Education
The NMF’s education and awareness programs focus on increasing
the likelihood of early and correct diagnosis and treatment of Marfan
syndrome and related disorders. We employ a number of strategies to
bring awareness to the medical community and we are gratified by the
results, such as when we hear about a life saved in a hospital emergency
department because of a presentation given to doctors or when a parent
tells us that their affected child is doing better in school because of the
materials we provided to the school nurse.
Highlights of 2008 include NMF exhibits at medical meetings for
targeted medical professionals:
• Emergency Nurses Association Leadership Conference, where we
promoted our new pocket resource, Aortic Dissection: Red Flags for
the Emergency Triage Nurse, which was funded with a generous
grant from the Jonathan Larson Fund.
• American Heart Association, American College of Cardiologists
Scientific Session and National Society of Genetic Counselors, where
we promoted the losartan vs. atenolol clinical trial to encourage
physicians and genetic counselors to talk to their Marfan patients
about enrolling in the trial.
• American Society for Healthcare Risk Managers, to ensure that
the NMF’s Emergency Medicine Campaign materials reach more
emergency medicine doctors and nurses.
• American Society of Human Genetics, to promote clinical trial
recruitment and the research grant opportunities available through
the NMF.
Public Awareness
Generating publicity about Marfan syndrome and the NMF helps to
ensure that people with Marfan syndrome and related disorders are
diagnosed accurately and treated properly. We also work hard to
heighten awareness of the NMF and reinforce the Foundation’s
reputation as a leading voluntary health organization. Among the
highlights this year were:
• Clinical trial coverage on network affiliate stations, including
WABC-TV in New York and WBZ-TV in Boston, as well as on
Doctor Radio.
• Coverage about the science behind losartan on National Public
Radio and in The Boston Globe.
• A feature story in Woman’s Day magazine about one family’s
experience with Marfan syndrome and the clinical trial.

When Emergency Medicine
Reviews and Perspectives (EM:RAP) wanted to produce
a continuing education program about aortic dissection,
we contacted the National Marfan Foundation. The NMF
is well-known as a leading advocate for people with aortic
disease and is well-connected to leading experts in this area
and the family of Jonathan Larson, the RENT playwright who
died of an aortic dissection. With the NMF’s input, we were
able to create an online CME program that was well-
received by the 8,000 doctors who are monthly subscribers
to our program.
Dr. Michael B. Weinstock
Co-author, Bouncebacks!
Emergency Department
Cases: ED Returns
Jonathan Larson, creator of RENT
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Support
Services
Information Resource Center
Providing support to the Marfan syndrome and related disorders
community is a daily commitment at the NMF, with emphasis placed
on providing high-quality, personalized answers and guidance on both
a national and local level. Our Information Resource Center, which
is staffed by a licensed social worker and registered nurse, is the
nucleus of this vital service, offering both medical and psychosocial
information and assistance to people who are affected with Marfan
syndrome and related disorders, as well as healthcare professionals.
The IRC is truly a life-line for those who are seeking a diagnosis and
those who are facing medical challenges.
Annual Conference
One of the high points of the year is the NMF’s Annual Conference, a
unique meeting for families affected by Marfan syndrome and related
disorders. They come together with the world’s leading medical experts
on Marfan syndrome for education, support and networking. The 2008
conference, co-hosted by Children’s Hospital Boston and Brigham
and Women’s Hospital, attracted approximately 500 people, including
about 100 teens and 60 children ages 6–12. Getting up-to-date medical
information is priceless for these families. So too are the psychosocial
benefits—people are empowered by the knowledge they gain and they
no longer feel alone.
National Volunteer Network
Volunteers are central to the success of the NMF. They are creative,
caring and dedicated individuals who, as part of a chapter or network
group or on their own, provide support to others in their community
who have Marfan syndrome or a related disorder and implement
awareness and fundraising events on behalf of the NMF.
With 55 chapters, support groups and network groups and 86 telephone
contacts, there were activities going on throughout 2008 that put
Marfan syndrome and related disorders in the spotlight. From a spina-thon
in Boston to marching for Marfan in Cleveland to educational
events in California, our volunteers are making a difference for the
Marfan community all year long.

Getting to know people
with Marfan syndrome through the NMF made it possible
for me to avoid the scared/worried/confused part of
having the condition. There are so many great role models
who helped me realize that I would be okay if I took care of
myself. Meeting other teens at the conference who are
going through the same experiences as me was mind-
blowing. I was able to hear other girls’ perspectives about
issues that worried me, from sports and exercise to fashion
and beauty. In the NMF community, Marfan is not some-
thing that makes you weird; it is accepted and shared
with everyone around you.
Through the NMF, I learned
acceptance and love for
Marfan syndrome.
Laurel Giacone, 14
Metairie, LA
Laurel Giacone
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Expanded
National
Initiative
The NMF has meant so much
to our family since my children and I are affected with
Marfan syndrome. That’s why it is so important for us
to support Heartworks each year. It
is an incredibly powerful evening that
has helped to increase respect for the
Foundation and secure essential funding
for its programs.
Gary Kauffman
Naples, FL
Heartworks
The NMF’s annual Heartworks gala is always a highlight of the year. The
recipients of our 2008 Hero with a Heart Awards, which are presented
at the gala, played a significant role in the federally-funded clinical
trial underway on a potential treatment for the aortic problems in
Marfan syndrome. Dr. Hal Dietz, of Johns Hopkins Hospital, and
Merck, Inc., were the honorees as more than 500 people enjoyed an
evening of hope and optimism, as well as great food and entertainment.
The monies raised are critical as they support the NMF’s core
programs of patient support, public awareness and medical education.
As a national organization, our vision has been to take the gala to
additional markets throughout the country. This year, a committed
group of volunteers held Heartworks Westchester, the first offshoot of
the successful flagship event. The May 29 event attracted more than
200 people and raised $250,000.
Gary and Mary Kauffman
with their son Adam and his wife Kate

Donors
The NMF extends sincerest gratitude
to all those who contributed financially
during our 2008 fiscal year. We list
here those who have contributed
amounts of $1,000 and above.
Platinum
($1,000,000 and above)
Anonymous
Gold Circle
($500,000–$999,999)
Nick & Whiteley Wheeler
Silver Circle
($250,000–$499,999)
Mr. & Mrs. Joel E. Smilow
Vital Projects Fund
Bronze Circle
($100,000–249,999)
American Heart Association, Inc.
The Gladys & Raymond Pearlstine
Trust
Ms. Ann Reinking
Benefactor
($50,000–$99,999)
Randy and Susan Falco
Estate of Ms. Alexandra Herchick
Mr. & Mrs. Allan Larson
Merck Company Foundation
Northern Illinois Chapter of the NMF
St. Jude Medical Foundation
Patron
($25,000–$49,999)
Allen & Company Inc.
American Legion Child Welfare
Foundation
Benefit in honor of Kaitlyn Anthony
Frank J. Antun Foundation
AOL LLC
Mr. & Mrs. Benjamin Carpenter
Gary & Mary Kauffman
Jay & Tammy Levine
Massachusetts Chapter of the NMF
Nautica/VF Corporation
NBC Universal
Robert & Catherine Reiley
Sholton Foundation
The Starr Foundation
Henry & Joan T. Wheeler
Charitable Trust
Mrs. Joan T. Wheeler
Sponsor
($10,000–$24,999)
Mr. & Mrs. Ken Akoundi
Dr. & Mrs. Charles Berst
Cassie's Run Fundraiser
Charmer Sunbelt Group
The Chu and Chan Foundation
Discovery Communications, LLC
Mr. Francesc Gines
Mr. & Mrs. Mark A. Heller
Mr. Frederick Iseman
KPMG, LLP
Mr. & Mrs. Jerry Lerman
Mr. Geoffrey Lewis
Macy's Inc.
Marissa Walk Fundraiser
Ms. Karen B. Murray
Neuco, Inc.
Mrs. Barbara Neustadt
Optima Fund Management
PennJersey Chapter of the NMF
Ridgefield Charitable Foundations
Mr. Edwin Roos
Mrs. Edmond J. Safra
Ms. Elna Schonholtz
Syms Foundation
Mr. & Mrs. Dave Traugott
Weill Cornell Medical College
Whole Foods Market Day Fundraiser
Supporter
($5,000–$9,999)
Akin Gump Strauss Hauer & Feld LLP
Mr. & Mrs. Scott D. Avitabile
Century 21 Associates Foundation
Chloe's Quest Inc.
Mr. George T. Christ
CIAMA Dinner
Michele Cripps/LA Tall Club
Casino Night
Millard & Heidi Dozier
Drink for a Cure Fundraiser
Effortless Investments
Management Co.
Dr. & Mrs. Michel Elia
Michael Goldstein &
Therese Vandenberg
Mr. & Mrs. Albert P. Harris
Ms. Phyllis Troupe Hawkins
Heart of Iowa Chapter of the NMF
Continued on next page
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Donors
continued
Mr. & Mrs. Mel Ilberman
JAFGO Golf Tournament
JCPenney
Ms. Pamela Kohlberg
The Levy Group
Mastercard International
Harold & Ellen McElhinny
Estate of Mr. Andy Palese
Norman & Jane Pearlstine
Dr. & Mrs. Frank Pollaro
Ross Stores, Inc.
Mrs. Nancy Shea
The Shubert Organization
Mr. Dennis Sullivan
Ms. Katharine Vestal
Mr. Seymour Zises
Partner
($1,000–$4,999)
Anonymous
ABM Janitorial Services
Brian & Nicole Acrish
Mr. Richard Adamski
Alpha Phi Omega March for
Marfan Fundraiser
Atlanta Local Network-NMF
Mr. Jerry Balest
Mr. R. Douglas Barnhart
Daniel & Mindy Bass
Mr. & Mrs. Michael W. Baumgartner
Ms. Irene Bishop
Mr. & Mrs. Theodore Blackston
Janna & Neil Bloomgarden
Bloomingdale's
BNE Associates
Mr. & Mrs. Scott Boilen
Mr. & Mrs. Steven Borg
Mr. Paul Boudreau
Mr. & Mrs. Bob Bower
Dr. & Mrs. Alan Braverman
Mr. & Mrs. Robert Brierley
Broccoli Aortic Group
Mr. Chris Buonanno
Mr. & Mrs. Roger Burrus
BWF Foundation, Inc.
Mr. & Mrs. Glenn Carr
Mr. Chris Carrabba
Ms. Karen Castellano & Mr. Jerry Newirth
Mr. & Mrs. Paul Cayo
Mr. & Mrs. William Cella
Chazen Foundation
Chef & Brewer's Dinner Fundraiser
Raymond & Joanne Chevallier
Cobalt Capital
Mr. Ron Cohen
Jeffery & Marty Cokin
Mr. & Mrs. William Conger
Heidi M. Connolly, MD
Cookie Magazine
Cookson Snow Trek Fundraiser
Mr. & Mrs. Richard Dawson
Mr. Michael Day
DC/Baltimore/N Virginia Metro
Network–NMF
Teri and Ken Dean
Mayuri & Urmil Desai
Mr. Peter Diamond
Ms. Wendy DiChristina
Mrs. Emily Dick
Mrs. Mary Dresser
Mr. & Mrs. Michael E. Dresser
Mr. & Mrs. Jonathan Dulman
Edwards Lifesciences Fund
Ms. Jennifer Emmert
Mr. & Mrs. Bruce England
Bruce English & Laurie Hammel
Ms. Ellen Farbstein
Mrs. Olga Farbstein
Mr. Mark E. Ferguson
Fishman & Tobin
Mr. & Mrs. Marc Flamino
Mr. & Mrs. Robert Flynn
Clair Francomano, MD
Mr. Walter K. Friedrichs
Mr. & Mrs. Thomas Gaston
GGLO, LLC
Laurel Giacone Fundraisers
Ms. Judy Gibaldi
Gibson, Dunn & Crutcher LLP
Paul & Emily Ginsberg
Global Export Marketing Co.
Mr. Michael D. Gottstein
Mr. & Mrs. Alan Grainger
Mr. Kevin Graveline
Greater Raleigh Chamber of Commerce
Greater St. Louis Chapter of the NMF
Mr. & Mrs. John M. Grimshaw
Mr. & Mrs. Bernard Grobart
Mr. Stephan Gross
Ms. Janet Gumer

Stacey & Eric Haber
Mr. Harry Harrison Jr.
Mr. & Mrs. Daniel Heimowitz
Ms. Dorothy Helphand
Mr. Brian Hempstead
Mrs. Anne H. Hinds
Roy & Sandra Hoffman
Dr. & Mrs. Charles Hollis, Jr.
Mr. Stephen Hooper
Ms. Elaine Hughes
Mr. Christopher Ihde
Mr. & Mrs. Barry Ilberman
Iona College
Doug Jakubowski & Joe Conforti
Allan & Debbie Janoff
Johns Hopkins University School of Medicine
Thomas & Joanne Jordan
Kaiser Permanente Foundation
Marvin & Barbara Katz
Mrs. Susan Keightley
Ms. Susan Kellogg
Mr. & Mrs. Chuck A Kelly
Mr. & Mrs. Jonathan C. Klein
Mr. & Mrs. Robert Kloss
Mr. Bryan Knepper
Randall & Amy Knox
Mr. Kenneth Kolker
Carmela Kolman & John Rizzo
Mr. & Mrs. Todd Kopstein
Mr. & Mrs. Seth Kornblau
Dr. & Mrs. Yamil Kouri
Mr. & Mrs. Harvey M. Krueger
L Street, LLC
Mr. & Mrs. Naftoli Lavrinoff
Mr. & Mrs. Steven Lefkowitz
Mr. & Mrs. Adam Leibner
Mimi & Jonathan Leibner
Mr. & Mrs. Jonathan Lerman
Mr. & Mrs. David Litvinsky
Ms. Tricia Kordalski
Lord & Taylor
Mr. Robert E. Lotwin
Ms. Luciana Camhaji MacDonald
Macy's Merchandising Group
Kathy Magee Quilt Fundraiser
Mr. Steven Marcus
Harry & Anna Masi
David & Sheila McLean
Alexandra McLean & Ezra Jennings
Mr. & Mrs. Gerald McNiece
Mr. & Mrs. Rudolf Meckel III
Mr. & Mrs. Scott Meyer
Bruce & Lynne Michelich
Flora Mincer, MD
Mrs. Dorothy Moore
Melissa & Alfred Morris
Mr. & Mrs. Joseph Moyer
Mr. C. J. Murray
Mr. & Mrs. Mark Mutkoski
Alan & Karen Nadel
Sharon Nasutovicz Fundraisers
Neill Supply Co.
Tracey & Andy Neuberger
Mr. & Mrs. Bill Neustadt
Jon & Julie Neustadt
Ambassador & Mrs. C. E. Norris, Jr.
Ogden Cap Properties
Jim & Karen O'Keefe
On the One
Mr. & Mrs. Steven Orbuch
O'Shea Family Foundation
Mrs. Kathleen Pace
Mr. Steven Palmer
Paramount Tall Club of Chicago
Ms. Jean Parsons
Charles & Suzanne Plambeck
Mr. & Mrs. Tom Pluta
Glenn & Ayelet Pollner
Blair & Susan Ranneberger
Mr. & Mrs. John Houston Read
David & Stacey Remnitz
RENT on Tour-Atlanta, Chicago, Iowa City
Ms. Kerri Reynolds
Mr. John D. Richardson
Mr. & Mrs. Bruce Ritell
Robert B. Samuels, Inc.
Aaron Robertson Golf Tournament
Michael & Gwen Rohrer
Dr. & Mrs. Thomas Romo
Mr. & Mrs. Peter Roos
Ms. Georgette C. Rothe
Courtney & Jonathan Rothstein
Steve G. Crombe & Will Rubino
Mr. Peter Sachse
Stacey & Marc Saiontz
Mr. & Mrs. Harvey Sanders
Ron & Carin Sanders
Harvey & Phyllis Sandler
Ms. Nancy Scanlon
Mr. & Mrs. Robert Schwarzenbek
Ms. Joan Scott & Mr. Geoff Dickey
Mr. Barry Seidman
Lesley & Andrew Serenyi
Doug Shapiro & Julie Scott
Mrs. Maureen Fergus Sheehan
Paul & Kristin Sholton
Jim Sidorchuk & Susan Toporowski
Costas and Constantine Sigalos
Mr. Shelby Sim
Mr. & Mrs. Robert Simek
Ms. Cynthia Simmons
Melissa & Scott Singer
Diane Sixsmith, MD
Blue & Michelle Smith
Frema & Ivan Sobel
Mr. & Mrs. Howard Socol
Lisa & Mark Soja
Linda & Barry Sommers
Daniel Speck Fundraiser
Lindsay Stavros
Mr. & Mrs. Jeffrey Stein
Robert & Sheila Stone
Ms. Anngi Sieger Strick
Mr. Robert D. Stuart, Jr.
Sucherman Consulting Group, Inc.
Elie & Rory Tahari Family Foundation
Michael & Lisa Taliercio
TCI Convention
Mr. & Mrs. Evan Templeton
Mr. Lee Terrill
Theo T. & Hilda Rose Foundation, Inc.
Mr. & Mrs. David Thomases
Adam & Aimee Thurlow
Mr. & Mrs. Michael S. Tracey
Mr. & Mrs. David Trinin
Peter & Marjorie Troob
Robyn & Douglas Troob
Jon Tullis
Keith & Catherine G. Turner
Mr. & Mrs. Mike Van Eekeren
Vons Supermarket Foundation
Wal-Mart Foundation
Warnaco
Ms. Amy Wildstein
Cheryl & Dave Williams
Julie Winch, Ph.D.
Mr. & Mrs. John Witte
Mrs. Caryn Wojtowicz
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Financial
Information
1%
9%
28%
4%
4%
54%
The NMF is currently running three large research programs that involve
substantial expenditures and are expected to take place over a number of
years. Due to the size of the financial commitment that is associated with
these programs, substantial fundraising was performed at the outset of
each. The result has been that all three programs are now fully financed
from either donations that have already been given or pledge payments
that will be received over the next few years.
However, according to the accounting rules to which the NMF is subject,
these gifts must be recorded as revenue in the year in which they were
given or pledged, but the corresponding expenditures (most of which will
be paid out over several years) are not recorded until the year in which
they are incurred. As a result, the NMF is currently making substantial expenditures
for which the associated revenues were recognized in earlier
years. Although the money for these expenses is on hand (or expected
from donors), the NMF’s reported financial statements will nonetheless
show a deficit for the years in which this reporting mismatch occurs.
This situation existed in the fiscal year ended June 30, 2008. During this
year, the NMF experienced a deficit that was substantially financed from
funds that had already been received for these programs.
Revenues FY08 Expenses FY08
Contributions
Memorials
Membership Dues
Conference
Program Revenue
Net Event Income
8%
24%
14%
Research & Grants
Public Information
Patient Services
13%
41%
Management & General
Fund Raising

Statement of Activities
Years Ended June 30, 2008 and June 30, 2007
Year Ended Year Ended
Temporarily June 30, June 30,
Unrestricted Restricted 2008 2007
Changes In Net Assets:
Revenues and gains:
Contributions $ 1,623,999 $ 1,623,999 $ 6,663,461
Memorials 110,920 110,920 114,530
Membership dues 115,818 115,818 81,474
National Marfan Conference 269,644 269,644 171,080
Program revenue 23,906 23,906 19,063
Net investment income
Events, net of expenses of
(8,613) (8,613) 439,027
$360,813 and $599,722 833,959 833,959 773,146
Revenues temporarily restricted (724,302) $ 724,302 - -
Total revenues and gains 2,245,331 724,302 2,969,633 8,261,781
Expenses:
Program services:
Research and grants 1,469,118 1,469,118 1,279,400
Public information 470,457 470,457 359,796
Patient services 870,167 870,167 770,197
2,809,742 - 2,809,742 2,409,393
Supporting services:
Management and general 279,175 279,175 241,833
Fund raising 483,037 483,037 349,320
762,212 - 762,212 591,153
Expenses temporarily restricted (1,347,785) 1,347,785 - -
Total expenses 2,224,169 1,347,785 3,571,954 3,000,546
Increase (decrease) in net assets 21,162 (623,483) (602,321) 5,261,235
Net assets at beginning 4,796,679 6,843,653 11,640,332 6,379,097
Net assets at end $ 4,817,841 $ 6,220,170 $ 11,038,011 $ 11,640,332
For a copy of the NMF’s complete audited financial statements for the years ended June 30, 2008 and 2007, go to www.marfan.org or
write to the National Marfan Foundation, 22 Manhasset Avenue, Port Washington, NY 11050.
15

16
Statement of Financial Position
June 30, 2008 and June 30, 2007
ASSETS
June 30, June 30,
2008 2007
Current Assets:
Cash $ 704,438 $ 383,163
Short-term investments 1,896,093 2,365,137
Unconditional promises to give 1,363,777 1,149,895
Other current assets 61,598 66,443
Total current assets 4,025,906 3,964,638
Property and Equipment:
Net of accumulated depreciation $357,315 and $309,926 853,429 878,577
Other Assets:
Long-term investments 3,538,252 3,669,165
Long-term unconditional promises to give 2,981,222 3,403,674
Total other assets 6,519,474 7,072,839
Total assets $ 11,398,809 $ 11,916,054
LIABILITIES AND NET ASSETS
Current Liabilities:
Accrued liabilities $ 160,553 $ 116,377
Deferred conference income 200,245 159,345
Total current liabilities 360,798 275,722
Net Assets:
Unrestricted:
General funds 2,858,352 2,943,948
Board designated funds 1,959,489 1,852,731
Temporarily restricted 6,220,170 6,843,653
Total net assets 11,038,011 11,640,332
Total liabilities and net assets $ 11,398,809 $ 11,916,054
For a copy of the NMF’s complete audited financial statements for the years ended June 30, 2008 and 2007, go to www.marfan.org or write
to the National Marfan Foundation, 22 Manhasset Avenue, Port Washington, NY 11050.

Board of
Directors
Jon Tullis
Chair
Gavin Lindberg
Vice Chair
Karen Murray
Secretary
Jim Sidorchuk
Treasurer
Susan Falco
Executive Committee Member-at-Large
Heather Holmes Floyd
Executive Committee Member-at-Large
Whiteley Wheeler
Executive Committee Member-at-Large
Scott Avitabile
Steven Crombe
Teri Dean
Thomas P. Fitzgerald
Barbara Heller
Gary Kauffman
Todd Krueger
Steve Marpman
Kathleen Mimnagh, MD
Mary J. Roman, MD
Diane Sixsmith, MD
Mary Sholton Witte
Chris Heaney
Board Advisor
Michael Weamer
Board Advisor
Ben Weisman
Board Advisor
Cheryl Williams
Board Advisor
Priscilla Ciccariello
Chair Emeritus
Carolyn Levering
President & CEO
Professional
Advisory Board
Dianna Milewicz, MD, PhD
University of Texas Houston
Health Science Center
Chair
Alan C. Braverman, MD
Washington University School of Medicine
Peter H. Byers, MD
University of Washington School of Medicine
Duke Cameron, MD
Johns Hopkins Hospital
Heidi Connolly, MD
Mayo Clinic
Joseph S. Coselli, MD
Baylor College of Medicine and
St. Luke’s Episcopal Hospital
Jessica G. Davis, MD
New York Presbyterian Hospital-
Weill Cornell Medical Center
Richard B. Devereux, MD
New York Presbyterian Hospital-
Weill Cornell Medical Center
Hal Dietz, MD
Johns Hopkins Hospital
Sylvia A. Frazier-Bowers, DDS, PhD
University of North Carolina at Chapel Hill
Ronald V. Lacro, MD
Children’s Hospital Boston
Irene H. Maumenee, MD
University of Illinois Eye and Ear Infirmary
D. Craig Miller, MD
Stanford University School of Medicine
Reed E. Pyeritz, MD, PhD
University of Pennsylvania School of Medicine
Francesco Ramirez, PhD
Mount Sinai School of Medicine
David L. Rimoin, MD, PhD
Cedars-Sinai Medical Center
Lynn Y. Sakai, PhD
Oregon Health Sciences University
Paul D. Sponseller, MD
Johns Hopkins Hospital
Vincent L. Gott, MD
Johns Hopkins Hospital, Member Emeritus
Victor A. McKusick, MD (1921–2008)
Scientic
Advisory Board
Bjorn Olsen, MD, PhD
Harvard Medical School
Chair
Craig T. Basson, MD, PhD
New York Presbyterian Hospital-
Weill Cornell Medical Center
John C. Carey, MD
University of Utah Health Sciences Center
Bruce D. Gelb, MD
Mount Sinai School of Medicine
Christine Seidman, MD
Harvard Medical School
Robert W. Thompson, MD
Washington University School of Medicine
Richard J. Wenstrup, MD
Myriad Genetic Laboratories, Inc.
Victor A. McKusick, MD (1921–2008)
Board members 2008–2009

22 Manhasset Avenue
Port Washington, NY 11050
800-8-MARFAN | 516-883-8712
www.marfan.org
Sydney Lerman