NATIonAL MARFAn FounDATIon AnnuAL REpoRT 2007

National Marfan Foundation
Annual Report 2007

22 Manhasset Avenue
Port Washington, NY 11050
800-8-MARFAN
www.marfan.org
At the National Marfan Foundation,
we are dedicated to providing innovative
solutions for people with Marfan syndrome
and related connective tissue disorders.
Our mission is to save lives and improve the quality of life for individuals and
families affected by Marfan syndrome and related connective tissue disorders.
Our goals and objectives are to:
• Expand awareness about Marfan syndrome and related disorders, as well
as the diagnosis and treatment of these conditions.
• Enhance support and access to care for patients with Marfan syndrome
and related disorders throughout the United States.
• Support research that advances knowlege about Marfan syndrome and
related disorders, leading to innovations in diagnosis and treatment.
• Establish trusted partnerships that increase our ability to enhance care
and services for the Marfan syndrome and related disorders community.
Front and back cover photos are of Suzanne Kouri and her son, Yamilito.
Photo credits:
Pages 2, 9, 10, 14, 17, 21 by Tim Joyce.
Front and back covers, pages 6, 13, 24 by Rick Guidotti.
Page 5 by Robert Boyd.
Copyright © 2008 National Marfan Foundation. All rights reserved.

Dear Friends,
It is with great pride that we present the National Marfan Foundation’s 2007
Annual Report, a reflection on recent achievements with a focus on what lies ahead.
Last year, we made significant advances in service to our constituency. Our core
programs, always robust, have expanded in breadth and scope. Local chapters,
network and support groups worked to improve lives and promote healthier local
communities through an increased volunteer force. At our national headquarters,
new educational strategies were created to raise national awareness. We leveraged
donor resources to expand research investments in laboratories worldwide. We
advocated on the legislative front for systemic change. We seized opportunities to
marshal change in your community.
The current Atenolol vs. Losartan in Patients with Marfan Syndrome clinical trial,
testing the potential of losartan as a new drug therapy for Marfan syndrome, is already
changing the way we do business. We are now operating within the environs of new
thinking, and of expanded possibilities, as we keep pace with the needs of today’s
increasingly discriminating Marfan consumer. At this time of heightened awareness
of Marfan syndrome, we have the opportunity to leverage the momentum and
expand interest in this field. In addition, we have the responsibility to recruit people
into the trial and educate and support them throughout the process. It is more
important than ever for people to receive an early and accurate diagnosis to afford
them the opportunity to benefit from new medical interventions.
While the demands will be great, the capabilities of our staff and commitment of our
board ensure that we will meet these challenges with innovative solutions. We will
seize new opportunities for educational product development, increased media outreach
to underserved audiences, expanded support services and strategic investments in
research. We will nurture the momentum we put in motion toward finding a cure.
In the last year, we grew in critical ways, even as we sustained core programs with
great commitment. This report is a perspective on our innovative, convening and
catalytic role in aligning investment resources with strategies that produced tangible
results.
Thank you for your confidence and distinguished partnership.
Joseph R. Gagliano, Jr. Carolyn Levering
Chair President & CEO

The NMF has sponsored research that has fundamentally
changed the approach to diagnosis and treatment of Marfan
syndrome and related disorders.
Alan C. Braverman, M.D.
Professor of Medicine and Director, Marfan Syndrome Clinic
Washington University School of Medicine
Brooke Pulliam

RESEARCH
Fostering research is a priority for the NMF. Each year we fund meritorious projects to the
extent we are able, facilitate research collaborations among scientists worldwide, and coalesce
key government bodies and research institutions for the purpose of advancing knowledge of,
and treatment for, Marfan syndrome. As catalysts in this arena, we continue to strive to improve
diagnostic, medical and surgical solutions so that people with Marfan syndrome and related
disorders have an opportunity to live a full life span.
Clinical Trial Initiative
In 2007, the critical clinical trial—Atenolol vs. Losartan in Patients with Marfan Syndrome—
began enrolling patients, ages six months to 25 years. This research, which is funded by the
National Heart, Lung and Blood Institute and conducted by the Pediatric Heart Network and
other leading Marfan syndrome clinics, has the potential to alter Marfan syndrome treatment
in the future.
NMF staff worked tirelessly to promote enrollment in this ground-breaking research. Our
proactive outreach included direct mail to 2,000 pediatric cardiologists and 200 geneticists in
the U.S. and exhibits at key medical meetings, including the Scientific Session of the American
Heart Association.
In addition, the Foundation began to provide patient support that made it possible for many to
enroll. This included travel and hotel scholarships as well as free airfare through a partnership
with the National Patient Travel Center.
An additional objective was to maximize the impact of the core clinical trial, which is looking at
the effect of losartan on the aorta, by funding ancillary studies that examine other body systems
affected by Marfan syndrome. After a successful fundraising campaign, the Foundation awarded
$1.7 million in 2007 to fund ancillary studies. The two studies funded were:
• Musculoskeletal phenotype of Marfan patients. Julie Hoover-Fong, MD, Johns Hopkins
University. This research examines the effects of losartan on bone and muscle mass.
• Study of the role of genetic variation in the phenotype variability and response treatment in
patients with Marfan syndrome. Dan Roden, MD, Vanderbilt University Medical Center,
and Bart Loeys, MD, PhD, Ghent University, Belgium. This research examines the potential
connections between responses to different drug therapies (losartan vs. atenolol) and
individual genetic factors.

Aortic Valve Operative Outcomes in Marfan Patients
Many people with Marfan syndrome require surgery to correct aortic root dilatation and aortic
valve dysfunction that leads to aortic tear and rupture. There has not been prior research
comparing aortic valve replacement (AVR) and aortic valve sparing (AVS) surgical interventions
within the framework of one study. In 2007, we supported this important work through more
than $250,000 in funding. In addition, we increased our public outreach efforts, resulting in
increased patient enrollment. We also leveraged this study to attract new corporate funders.
Traditional Research Grant Program
Since 1989, our objective has been to ensure that the most promising Marfan research is
supported. The NMF Research Grant Program has provided initial financial support for
various Marfan syndrome-related projects. Our 19th Annual Research Fund Drive generated
$235,000. This enabled us to award $150,000 in traditional research grants. The three studies
awarded $50,000 each were:
• Mechanism of latent TGF-β activation in Marfan cells. Daniel B. Rifkin, PhD, New York
University School of Medicine. This study is focusing on how and why the protein called
transforming growth factor-beta ( TGF-β) is increased in Marfan cells.
• Pathophysiology of skeletal deformities in Marfan syndrome. Luca Carta, PhD, Mount Sinai
School of Medicine, NJ. This is an investigation into how a mutation in the gene that
causes Marfan syndrome (fibrillin-1) creates skeletal features and deformities.
• Characterization of the mechanisms of fibrillin gene regulation. Peter Robinson, PhD,
Institute of Medical Genetics, Charite Universitatsmedizin, Berlin, Germany. This is an
examination of the possible explanation of variable expression in Marfan syndrome.
In addition, the NMF awarded the second half of a 2006 two-year $100,000 grant to
Michael Reiss, MD, The Cancer Institute of New Jersey, for his study, Structure-function
studies of transforming growth factor-β receptor mutations in Marfan-like syndromes. This study
has combined the connective tissue field with cancer and developmental biology by using an
insect model to understand how these mutations cause Loeys-Dietz syndrome.
Victor A. McKusick Fellowship Program
To support future leaders in the research arena, the NMF awards the Victor A. McKusick
Fellowship each year. This nurtures young talent in research and supports promising scientists
who are investigating important areas of Marfan syndrome.
In 2007, a one-year McKusick Fellowship grant ($75,000) was awarded to Raymond Eid, MD,
Department of Surgery, Yale University. Dr. Eid’s study, Role of IL-17A in Marfan syndrome,
may expand our understanding of TGF-β/IL-17A interaction and the role of inflammation
in aortic breakdown and enlargement.

Daniel B. Rifkin, PhD

Micah Amdur-Clark

ADVOCACY &
GOVERNMENT
RELATIONS
In 2007, the NMF continued to advocate for government policies and resources that improve
access to healthcare for the Marfan syndrome and related connective tissue disorders community
and support research funding for these disorders. We pursued our legislative agenda with
vigor and expanded our affiliations and partnerships with supportive organizations and coalitions
to help us reach our goals.
Our advocacy program this year resulted in a number of significant accomplishments,
including:
• Congressional recommendations in the Fiscal Year 2008 Health and Human Services
Appropriations Bill encouraging the Centers for Disease Control and Prevention,
National Heart, Lung and Blood Institute, and National Institute of Arthritis and
Musculoskeletal and Skin Diseases to expand their research and awareness programs on
Marfan syndrome.
• Establishment of an NHLBI Working Group on Research in Marfan Syndrome and
Related Disorders, chaired by Dr. Hal Dietz.
• Outreach to the leadership of CDC’s National Center on Birth Defects and Developmental
Disabilities regarding the need for early diagnosis and prevention of aortic dissection.
• The NMF, as one of only a handful of organizations selected, testified at a Social Security
Administration Outreach Hearing in Washington on “Compassionate Disability Allowances”
for patients with rare diseases.
• NMF Advocacy Action Alerts distributed to the Foundation’s grass-roots network
facilitated communication with legislators regarding increased funding for the National
Institutes of Health, the Genetic Information Non-Discrimination Act and legislation
about the expansion of Medigap supplemental insurance coverage.

SUPPORT &
MEMBER SERVICES
The NMF takes very seriously its support services role on the national level, and is intent
on providing one-on-one, customized support to all who need it—whether they are seeking
diagnosis, newly diagnosed or facing new challenges in their Marfan journey. At the same
time, the Foundation is equally committed to expanding its grass-roots network so that
volunteers from coast to coast can find the peer support they need locally and do their part
to advance the NMF’s mission in their own backyards.
Information Resource Center
Our Information Resource Center (IRC), accessible through our toll-free number, 800-8-
MARFAN, and our website, www.marfan.org, provides accurate, current, disorder-related
information to the public, health care professionals, patients and their families. Our registered
nurse and licensed social worker speak with callers and answer email correspondence Monday
through Friday, 9 a.m. to 5 p.m. Eastern Time. In 2007, IRC staff responded to approximately
4,500 phone and email inquiries and distributed more than 3,000 information packets on
Marfan syndrome and related disorders.
This year, the IRC played an expanded role in serving Marfan clinics nationwide. The NMF
provided the clinics with new plain-language publications for recently-diagnosed patients and
their families. Our professional staff also assisted nurses and genetic counselors who encountered
difficult patient care case questions by creating an e-list forum to share and acquire information.
Growing the National Volunteer Network
The National Volunteer Network (NVN), consisting of Chapters, Network Groups, Support
Groups and individual volunteers, carries out the NMF mission at the local level. In 2007,
volunteers worked diligently to raise public and medical awareness, provide peer support and
raise funds for NMF programs and research.
This year, approximately 60 groups around the country conducted grass-roots initiatives that
are aligned with the NMF mission. They organized fundraisers, including tie-ins with Starbucks
and Whole Foods; they partnered with the touring company of the Broadway show, Rent, to
generate awareness as the show was performed in various cities; and they organized local
meetings for group members to learn about Marfan syndrome from local experts and develop
bonds with each other.

Mary Burchett and her mother, Cindy
The National Volunteer Network has allowed me to find fellowship
with people who suffer from the same pain and frustration that I have
experienced. As a Network Group leader, I have valued the opportunity
to repay what the NMF has given me.
Mary Burchett
Group Leader, Central Kentucky Network Group

The NMF taught me how to be an aggressive advocate
for change and improvement of medical care for our
multi-system disorder.
Anthony Smith
Brooklyn, NY
Anthony Smith and his daughter, Jennifer

Introducing the Teen Web Page
To address the unique issues and concerns of teens with Marfan syndrome, the NMF created a
new teen web page. Utilizing the technology that is most comfortable for teens, the Foundation
began using the Internet to speak directly to the teen-aged Marfan community—providing
answers to teens’ common medical questions, telling them about Marfan events that would
be of interest to them, and offering fashion tips to help them dress comfortably despite their
typically long, disproportionate body. The website also provides for interaction through which
young people with Marfan syndrome can find a way to get involved with the NMF as they
share hopes, fears and dreams.
Presenting the Annual Conference
Each year, the NMF partners with a leading medical institution to host a conference for people
affected by Marfan syndrome and related disorders. The conference is educational, as well as
supportive, life-affirming and life-saving.
The Stanford University campus in Northern California was brimming with excitement,
discovery and learning in July 2007 when 500 affected individuals and family members,
physicians and world Marfan experts convened for the NMF’s 23rd Annual Conference.
Patient evaluations, medical presentations, small group workshops, special activities, programs
for children and teens, and events for young adults transformed those who came eager to
allay fears, renew their hope and find new ways to cope.
Ninety-five NMF members, half of whom were children, were awarded NMF Conference
Scholarships from the Foundation totaling close to $30,000.

EDUCATION
& AWARENESS
The NMF effectively leveraged opportunities to promote awareness of Marfan syndrome and
related disorders among the general public and the medical community. By securing media
coverage, we reached millions via television, radio, newspapers and magazines. This year’s media
accomplishments moved us closer to our goal to make “Marfan syndrome” a household word.
In addition to our consumer media campaign, we target specific healthcare professionals to
increase early diagnosis and to ensure that affected people get appropriate treatment—either
on a regular basis or in an emergency situation. Two key audiences targeted in 2007 were
school nurses, who are on the frontline of care for our nation’s children, and emergency
nurses, who play a critical role in the care of patients with a potentially fatal aortic dissection.
2007 Media Highlights
The NMF’s track record in high profile media continued this year. Woman’s Day magazine,
which has a circulation of 4.2 million, included a feature article by NMF member Kari Dostalik,
of Iowa, whose young daughter, Haley, has Marfan syndrome. This heartfelt, first person
account was both informative and emotional, as Kari chronicled how Haley was diagnosed
and the decision to enroll her in the clinical trial.
The Foundation was equally successful on national television, with a segment about Marfan
syndrome on NBC’s Today Show, which reaches millions of Americans every day. The segment,
filmed primarily at the NMF Annual Conference, aired in November. It featured the Marfan
journey of one of our youngest members, seven-year-old Brooke Pulliam of Missouri, as it
provided viewers with key information about Marfan syndrome and showcased the support
that the NMF provides the Marfan community. The piece also communicated the hope that
now exists due to the exciting research underway.
Media coverage also got a boost in the summer, as we leveraged our Annual Conference at
Stanford University. The San Francisco media responded, based on the excitement stirred by
Stanford University participating in the critical research as a clinical trial site. Both the ABC
and Fox network affiliate stations produced a Marfan syndrome segment and the San Francisco
Examiner published an article about the disorder.
Throughout the year, articles appeared in daily newspapers and broadcast stories aired in
markets large and small, covering the various activities of individuals in our National
Volunteer Network. This coverage increased awareness about Marfan syndrome and related
disorders and drove people to the NMF website for information about getting evaluated for
diagnosis and connecting to the NMF.

Michelle Cripps

Sophia and Christian D’Angelo

Reaching the School Nurse
This year, the NMF completed Marfan Syndrome: Need-to-Know Information for the School
Nurse CD-ROM, a project funded by a grant from the American Legion Child Welfare
Foundation. The CD-ROM was targeted to members of the National Association of School
Nurses through direct mail, through an exhibit at their national conference and at regional
association meetings, as well as through articles in nursing publications. As a result, more
than 2,000 CD-ROMs were disseminated to school nurses from coast to coast.
In an online survey of nurses who requested the CD-ROM, it was revealed that 43 percent of
respondents either have, or have had, a student with Marfan syndrome. In addition, close to
one-third of respondents admitted to not having any knowledge of Marfan syndrome at all.
Their comments showed their appreciation of the materials:
In the past year I have found at least five undiagnosed elementary kids. I wish every
association/foundation would create a similar CD for specific pediatric disorders.
I appreciate your organization being there to empower parents and children with
Marfan syndrome.
Thank you for recognizing that school nurses are valuable for diagnosis, support and
education.
I would like to know a lot more so I can educate teachers about this. Then, we will better
understand the condition and how it affects our students who have Marfan syndrome.
Promoting the Emergency Medicine Campaign
Dissemination of our Emergency Medicine Campaign kit, consisting of comprehensive
materials about Marfan syndrome and aortic dissection, continued. Approximately 2,000
Emergency Medicine Campaign kits have been distributed.
A new resource, Aortic Dissection: Red Flags for the Emergency Triage Nurse, was created this
year. This pocket guide was funded by the Jonathan Larson Fund of the NMF. Our direct
market campaign reached 5,700 emergency nurse managers and directors of emergency
departments of 4,050 hospitals. We also secured coverage in trade media, which reached
thousands of emergency nurses nationwide.

ORGANIZATIONAL
CAPACITY BUILDING
In 2007, we celebrated the successful conclusion of the clinical trial fundraising initiative.
This secured the funding necessary for the NMF to provide grants to ancillary studies for the
clinical trial, as well as patient support, assistance and education, to ensure that the dream of
this breakthrough science is maximized.
In addition, we were able to strengthen our membership, build relationships with a broad circle
of partners and increase and diversify our fundraising capabilities. This enabled us to expand
our organizational capacity so that we can build on today’s achievements and accomplish
even more in the future.
Growing Partnerships
The NMF enjoys long-time relationships with the National Organization for Rare Disorders
and The Genetic Alliance. The Foundation continues to meet the stringent Standards of
Excellence set by the National Health Council (NHC). Our continued membership in the
NHC and Health First–America’s Charities has given us the opportunity to network with
other leading voluntary health organizations.
Further bolstering our standing in the nonprofit world, the NMF earned its fourth consecutive
4-star rating from Charity Navigator, America’s largest independent evaluator of charities.
This is the highest rating awarded; it indicates that the NMF, as compared to other charities
in the U.S., is successfully managing its finances in an efficient and effective manner.
Special Event: HeARTworks Annual Gala
In 2007, HeARTWorks, held at Cipriani 42nd Street in New York City, raised a record $1.1
million for the National Marfan Foundation. Chaired by Ted Knetzger and Jay Levine, RBS
Greenwich Capital; O. Wayne Isom, MD, Weill Cornell Medical Center; Sir Anthony Dowell;
John Kander; and Albert Stephenson, the Marfan Gala was a unique showcase of artistconceptualized
hearts, a silent and live auction and performances by legendary stars of stage
and film, Patti Lupone and Mandy Patinkin, and Broadway Kids.
Honorable tribute was paid to three extraordinary honorees who received the Foundation’s
Hero with a Heart Awards: Award-winning actor and choreographer Ann Reinking; Ben
Carpenter, Vice Chair, Greenwich Capital Markets; and Antonio Gotto, MD, Suzanne Weiss
Dean of Weill Medical College of Cornell University. The corporate host for the gala was
Karen Murray, Liz Claiborne, Inc., and New York City Mayor Michael Bloomberg was
honorary chair. NBC-TV’s Ann Curry served as master of ceremonies.

Ann Reinking and Mayor Michael Bloomberg
Supporting the HeARTworks Gala is our family's way of connecting to
the Marfan community. We know that our contributions go directly to
the Foundation's life-saving programs and services and make a real
difference for all those affected.
Britt & Dave Traugott
Alpharetta, GA

STATEMENT OF FINANCIAL ACTIVITIES
Years ended June 30, 2007 and June 30, 2006
Changes In Net Assets:
Revenues and gains:
Unrestricted
Temporarily
Restricted
Year Ended
June 30, 2007
Year Ended
June 30, 2006
Contributions $ 6,663,461 – $ 6,663,461 $2,119,378
Memorials 114,530 – 114,530 78,128
Membership dues 81,474 – 81,474 134,321
National Marfan Conference 171,080 – 171,080 201,102
Program revenue 19,063 – 19,063 28,235
Net investment income 439,027 – 439,027 189,519
Events, net of expenses of
$599,722 and $299,419
773,146 – 773,146 800,654
Revenues temporarily restricted (6,351,762) $6,351,762 – –
Total revenues and gains 1,910,019 6,351,762 8,261,781 3,551,337
Expenses:
Program services:
Research and grants 1,279,400 – 1,279,400 1,034,611
Public information 359,796 – 359,796 625,029
Patient services 770,197 – 770,197 639,371
Subtotal 2,409,393 – 2,409,393 2,299,011
Supporting services:
Management and general 241,833 – 241,833 228,681
Fund raising 349,320 – 349,320 364,502
Subtotal 591,153 – 591,153 593,183
Expenses temporarily restricted (1,470,055) 1,470,055 – –
Total expenses 1,530,491 1,470,055 3,000,546 2,892,194
Increase (decrease) in net assets 379,528 4,881,707 5,261,235 659,143
Net assets at beginning 4,417,151 1,961,946 6,379,097 5,719,954
Net assets at end $ 4,796,679 $ 6,843,653 $ 11,640,332 $ 6,379,097
For a copy of the NMF’s complete audited financial statements for the years ended June 30, 2007 and 2006, go to www.marfan.org or
write to the National Marfan Foundation, 22 Manhasset Avenue, Port Washington, NY 11050.

REVENUES FY07
2%
1%
1%
8%
5%
11%
26%
10%
EXPENSES FY07
81%
12%
43%
Contributions
Memorials
Membership Dues
Conference
Net Investment Income
Net Event Income
Research & Grants
Public Information
Patient Services
Fund Raising
Management & General

STATEMENT OF FINANCIAL POSITION
June 30, 2007 and June 30, 2006
ASSETS
June 30, 2007 June 30, 2006
Current Assets:
Cash $383,163 $301,192
Short-term investments 2,365,137 2,336,512
Unconditional promises to give 1,149,895 337,819
Other current assets 66,443 53,060
Total current assets 3,964,638 3,028,583
Property and Equipment:
Net of accumulated depreciation $309,926 and
$265,390
878,577 858,432
Other Assets:
Long-term investments 3,669,165 2,738,671
Long-term unconditional promises to give 3,403,674 –
Total other assets 7,072,839 2,738,671
Total assets $11,916,054 $6,625,686
LIABILITIES AND NET ASSETS
Current Liabilities:
Accrued liabilities $116,377 $166,537
Deferred conference income 159,345 80,052
Total current liabilities 275,722 246,589
Net Assets:
Unrestricted:
General funds 2,943,948 2,806,266
Board designated funds 1,852,731 1,610,885
Temporarily restricted 6,843,653 1,961,946
Total net assets 11,640,332 6,379,097
Total liabilities and net assets $11,916,054 $6,625,686
For a copy of the NMF’s complete audited financial statements for the years ended June 30, 2007 and 2006, go to www.marfan.org or
write to the National Marfan Foundation, 22 Manhasset Avenue, Port Washington, NY 11050.

Paul Hartmann

MAJOR DONORS
The NMF extends sincerest gratitude to all those who contributed financially during our
2007 fiscal year. We list here those who have contributed amounts of $1,000 and above.
Platinum
($1,000,000 and above)
Anonymous
Silver Circle
($250,000–$999,999)
Nick & Whiteley Wheeler
Mr. & Mrs. Joel E. Smilow
Vital Projects Fund
Bronze Circle
($100,000–249,999)
Chris & Pam Heaney
RBS Greenwich Capital
Ms. Ann Reinking
Benefactor
($50,000–$99,999)
Mr. & Mrs. Benjamin Carpenter
Randy and Susan Falco
St. Jude Medical Foundation
Patron
($25,000–$49,999)
Joseph R. Gagliano, Jr. & Walter Smith
JC Penney Company
Gary & Mary Kauffman
St. Jude Medical Foundation
Stanford University & Clinics
Allen & Company Inc.
American Heart Association, Inc.
American Legion Child Welfare
Foundation
Frank J. Antun Foundation
AOL LLC
Mr. & Mrs. Allan Larson
Liz Claiborne Foundation
New York Presbyterian Hospital
Northern California Chapter of the NMF
Optima Fund Management
The Starr Foundation
George J. Volan, M.D.
Henry & Joan T. Wheeler
Sponsor
($10,000–$24,999)
Aaron & Betty Lee Stern Foundation
Boston Scientific Corp.
BWF Foundation, Inc.
DMK International
Mr. & Mrs. William Floyd III
Barbara & Mark Heller
Mr. & Mrs. Mel Ilberman
Kellwood Company
KPMG, LLP
The Lehman Brothers Foundation
Jonathan & Barbara Lerman
Macy’s/Bloomindale’s
March of Dimes Foundation
Marissa Walk Fundraiser
Medtronic Foundation
Ms. Karen B. Murray
Neuco, Inc.
Mrs. Barbara Neustadt
Northern Illinois Chapter of the NMF
Ms. Daphne Rubin Vega
Mrs. Elna Schonholtz
Sholton Foundation
The Shubert Organization
Syms
Thornberg Charitable Foundation
Mr. Keith G. Turner
John & Mary Sholton Witte
Supporter
($5,000–$9,999)
American Express Foundation
Century 21 Associates Foundation
Charmer Sunbelt Group
Steve G. Crombe & Will Rubino
Dr. Scholl Foundation
Mr. Walter Friedrichs
Edwin & Katherine Knetzger
Mr. & Mrs. Steven Lefkowitz
Jerry & Judith Lerman
Jay & Tammy Levine
The Levy Group
Ms. Deirdre Mahaney
Mr. Jonathan Mason
Harold & Ellen McElhinny
Kathleen Mimnagh, MD
Melissa & Alfred Morris
Ms. Vivienne Murray
Ms. Juliana O’Neill
Pioneer Credit Fundraiser
Ross Stores, Inc.
Mr. Morris Sachs
Diane Sixsmith, MD
Mr. Lawrence N. Skeats
Suzie Hayes-Schwartz & Andy Schwartz
TJX Companies
Mr. Allan Williams
Partner
($1,000–$4,999)
ABM Janitorial Services
Mr. Richard Adamski
Mr. & Mrs. Ken Adelberg
Aetna Giving Campaign
Ken and Ilana Akoundi
Cyndi Allen Fundraiser
Alpha Phi Omega Theta Upsilon
Fundraiser
Altair Eyewear
Mr. & Mrs. Luis Arias
Mr. & Mrs. Scott D. Avitabile
Ben & Margaret Ann Aycock
Baden Local Network
Baker Street Trust
Mr. Nigel Banyard
Mr. R. Douglas Barnhart
Mr. Raymond H. Bateman
Mr. & Mrs. Michael W. Baumgartner
Ms. Jane Bender
Ms. Joan Bernhard
Dr. & Mrs. Charles Berst
Christina & Mark Bilsky & Ann Powers
Ms. Irene Bishop
Mr. Carmont Blitz
Mr. Paul Boudreau
Mr. & Mrs. Bob Bower
Alan & Rebecca Braverman
Roger & Danielle Burrus
California Tip Toppers
Ms. Karen Castellano &
Mr. Jerry Newirth
Paul and Dorothy Cayo
Central Arizona Tall Society
Ceplenski-Murphy & Good Neighbors
Fundraiser
CFO Fund
Charles Komar & Sons
Mr. & Mrs. Paul R. Charron
Chazen Foundation
Chef & Brewer’s Dinner Fundraiser
Raymond & Joanne Chevallier
Chocolate Lovers Fantasy Night
Fundraiser
Mr. George T. Christ

Mrs. Priscilla C. Ciccariello
Jeffery & Marty Cokin
Mr. Rick Cotton
Julie & Dennis Culley
Ms. Elizabeth Darling
Mr. George Davala
Joanne & Michael Day
Teri and Ken A. Dean
Mr. & Mrs. James Dresser
Drink for a Cure Fundraiser
Bruce & Ellen England
Bruce English & Laurie Hammel
Mr. Mark Epstein
Mr. Milton Farbstein
Mr. Daniel Faucetta
Mr. Mark E. Ferguson
Mr. & Mrs. Robert Ferris
Fishman & Tobin
Brian & Beverly Freeman
Gabriel Brothers Inc
Mr. James Garbus
Mr. Juan Robles Garcia
Mr. Robert J. Garry
Rabbi Marc Gellman
GGLO, LLC.
Ms. Judy Gibaldi
Mr. Sheldon Goldfarb
Stanley Goldstein, MD
Michael Goldstein &
Therese Vandenberg
GQ Magazine
Grace Jones Richardson Trust
Mr. Scott Graham
Mr. & Mrs. Alan Grainger
Greater St. Louis Area Marfan
Chapter of the NMF
Greves Family Charity Dance
Mr. John M. Grimshaw
Guinea Entertainment
Ms. Rehana Haniff
Hartmarx Charitable Foundation
Ms. Joann Hayssen
Heart of Iowa Chapter of the NMF
Hedy Ltd.
Mr. & Mrs. Daniel Heimowitz
Ms. Dorothy Helphand
Henry's Hearts Foundation, Inc.
Mr. Mark Herman
Mrs. Anne H. Hinds
Roy & Sandra Hoffman
Dr. & Mrs. Charles Hollis, Jr.
Hyperion
ICM
Mr. & Mrs. Barry Ilberman
Jackon, PTP Inc.
Mr. Doug Jakubowski
Mr. & Mrs. Allan Janoff
Mr. & Mrs. Lincoln Kaiser
Mr. J. F. Kay
Knothe
Mr. Barry Knox
Mr. Kenneth Kolker
Suzanne & Yamil Kouri
Mr. & Mrs. David S. Kriss
Ms. Jacqueline Laipply
Adam & Amy Leibner
Ms. Carolyn Levering
Ms. Kathy M. Livingston
Liz Claiborne Shoes
Loehmann’s
Ms. Tricia Kordalski
Lord & Taylor
Mr. Robert E. Lotwin
Louisville, KY Local Network RENT
Fundraiser
Mr. Robert Lutz
Mr. Michael Lyublinsky
Kathy Magee Fundraiser
Ms. Debra Malbin
Marsal Family Foundation
Harry & Anna Masi
David & Sheila McLean
Mr. & Mrs. Gerald McNiece
Mr. & Mrs. Rudy Meckel, III
Mr. Ernest J. Meinhardt, MD
Merck Partnership for Giving
Mr. & Mrs. Bruce Michelich
Ms. Carol Miller
Flora Mincer, MD
Mobile 8 Apparel Corp.
Ms. Brenda Montera
Mrs. Dorothy Moore
Mr. & Mrs. Robert Moran
Ms. Cherna Moskowitz
Motoring for Marfan Fundraiser
Mr. & Mrs. Joseph Moyer
Mr. Ryan Mullaney
Mr. C. J. Murray
Nat Nast Company
National Instruments
Jeanette Navia Blogathon
Mr. & Mrs. Bill Neustadt
Jon & Julie Neustadt
New York Hospital Medical Center of
Queens
Mr. William O’Connor
Jim & Karen O’Keefe
Bernard & Rosemarie Oliveri
On the One
Ms. Pamela Orenstein
Mr. Wayne Oster
P R Painting Co.
Mrs. Kathleen Pace
Paramount Tall Club of Chicago
Nicholas & Carol Paumgarten
Jerry & Eleanor Pettus
Dr. & Mrs. Frank Pollaro
Ms. Alecia Porter
Reed E. Pyeritz, M.D., Ph.D.
Elaine & Robert Raisler
Randa Associates
Blair & Susan Ranneberger
Ms. Merle Reskin
Edward Roberts & Elaine Krauss
Mr. & Mrs. Randy Rogers
Mr. & Mrs. Michael W. Rohrer
Dr. & Mrs. Thomas Romo
Ron Chereskin Studios, Inc.
Mr. & Mrs. Andrew Roos
Mr. Peter Roos
Mr. & Mrs. Marc Rosenthal
Ross Store, Inc.
Rotary Club of Monroeville
Meg & Stewart Russell
Ms. Diana M. Ryan-Assatly
Paul & Alison Savage
Mr. Richard Savitt
Mr. Michael Schlanger
Mr. & Mrs. Robert Schwarzenbek
Ms. Sondra Scott
Terry Scheiner & Jose Seligson, MD
Lesley & Andrew Serenyi
Ms. Jennifer Shaffer
Ms. Nancy Shea
Dr. & Mrs. Howard Siegel
Mr. Stephen Skowronek
Mr. & Mrs. Howard Socol
Mr. & Mrs. Michael Sosko
Specialized Construction Sites &
Services
Ms. Elise Sinay Spilker
Sheila & Bob Stone
Mr. & Mrs. Roland Strick
Sucherman Consulting Group, Inc.
Mr. & Mrs. Mitchell Sussman
Swimwear-Anywhere, Inc.
Mr. Peter Talbert
Mr. Richard Tang
Mr. Lee Terrill
Mr. Alex Thurlow
Mr. Jon Tirtinsky
Roberta & Peter Tomback
Mr. & Mrs. Michael S. Tracey
Robyn & Douglas Troob
Mr. Jon Tullis
Mr. & Mrs. Mike Van Eekeren
Ms. Katharine Vestal
Ms. Ann Watt
Mr. Josh Weeks
Mr. David Wells
Tom White & Nancy Tove
Paul & Gail Whiting
Cheryl & Dave Williams
Mrs. Caryn Wojtowicz
Mr. Paul Yablon
Ms. Lisa Zicari

There is going to be a critical need for the Marfan community
and for investors to recognize that we’ve made great strides, but
that there are going to be new challenges and new opportunities
to overcome those challenges. This is a long-term partnership.
Hal C. Dietz, M.D.
Victor A. McKusick Professor of Genetics and Medicine
Director, William S. Smilow Center for Marfan Syndrome Research
Johns Hopkins University
Patrick Bowman (bottom) and Reid Bowman

Board of Directors
Officers
Joseph R. Gagliano, Jr., Chair, New York
Whiteley Wheeler, Vice Chair, California
Karen Murray, Secretary, New York
Jim Sidorchuk, Treasurer, New York
Susan Falco, Executive Committee
Member-at-Large, New York
Members-at-Large
Steve Crombe, Florida
Teri Dean, Iowa
Thomas Fitzgerald, New Jersey
Heather Holmes Floyd, Massachusetts
Barbara Heller, Maryland
Gary Kauffman, Florida
Todd Krueger, California
Gavin Lindberg, Maryland
Steve Marpman, New York
Kathleen Mimnagh, MD, West Virginia
Diane M. Sixsmith, MD, New York
Jon Tullis, Pennsylvania
Mary Sholton Witte, Alaska
Priscilla Ciccariello, Chair Emeritus, New York
Scientific Advisory Board
Bjorn Olsen, MD, PhD, Chair
Harvard Medical School
Victor A. McKusick, MD
Johns Hopkins Hospital
Craig T. Basson, MD, PhD
New York Presbyterian Hospital–Weill Cornell
Medical Center
John C. Carey, MD
University of Utah Health Sciences Center
P. Michael Conneally, PhD
Indiana University School of Medicine
Darwin Prockup,
Tulane University Health Sciences Center
E. Helene Sage, PhD
Benaroya Research Institute
Christine Seidman, MD
Harvard Medical School
Robert W. Thompson, MD
Washington University School of Medicine
Professional Advisory Board
Dianna Milewicz, MD, PhD, Chair
University of Texas Houston Health Science Center
Barbara Bowles Biesecker, MS
National Human Genome Research Institute, NIH
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
Clair Francomano, MD
Harvey Institute for Human Genetics
Sylvia A. Frazier-Bowers, DDS, PhD
University of North Carolina at Chapel Hill
Irene Maumenee, MD
Johns Hopkins Hospital
D. Craig Miller, MD
Stanford University School of Medicine
Reed E. Pyeritz, MD, PhD
University of Pennsylvania School of Medicine
Francesco Ramirez, PhD
UMDNJ—Robert Wood Johnson School
of Medicine
Lynn Y. Sakai, PhD
Oregon Health Sciences University
Paul D. Sponseller, MD
Johns Hopkins Hospital
Vincent L. Gott, MD, Member Emeritus
Johns Hopkins Hospital
Victor A. McKusick, MD, Member Emeritus
Johns Hopkins Hospital
Carolyn Levering
President & CEO