ANNUAL REPORT 2011 - National Marfan Foundation

ANNUAL 

REPORT 

2011

The National Marfan Foundation, 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 Marfan 

syndrome and related disorders 

• 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 

• Healthcare professionals 

• The general public 

Support Services 

Helping individuals and families with Marfan 

syndrome and related disorders through: 

• The NMF Information Resource Center, 

which provides access to personalized service 

through a toll free helpline, 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 

Front cover: Brett Van Endel and daughter, Emri 

Above: Frank Ross

Dear Friends, 

It has been 30 years since the inception of the 

National Marfan Foundation. The impact of our 

achievements is reflected in the faces of the Marfan 

syndrome and related disorders community: our 

older members, our families, our medical advisors 

and, most of all, our younger members, who love 

life and are eager to fulfill their dreams. In this 2011 

Annual Report, covering July 1, 2010, through 

June 30, 2011, we are proud to share our most 

recent accomplishments. 

In the past year, we have demonstrated our strength, 

innovation, ingenuity and commitment. This was 

crucial as the beginning of the fiscal year coincided 

with the publication of new diagnostic criteria for 

Marfan syndrome (which we facilitated). We leveraged 

social media to increase public awareness among 

new and existing audiences; we tapped into smartphone 

technology to simplify diagnosis for doctors; 

and we spearheaded an international research 

meeting to foster collaboration among scientists to 

propel studies on diagnostics and therapeutics to 

the next level. 

The motivation for our founding in 1981—to help 

people with Marfan syndrome who had nowhere to 

turn—is equally urgent today. The stakes are high. 

People affected by Marfan syndrome and related 

disorders face life-threatening events if they are not 

diagnosed accurately and treated comprehensively. 

As the only voluntary health organization focused 

on these conditions, we must build on the past and 

accelerate our programs in awareness, patient and 

family support, and research to the extent that is 

possible, given our limited resources. 

What we have accomplished in the past year—and 

in the past 30 years—is remarkable, yet our story is 

unfinished. There are still affected people who are 

not diagnosed or treated correctly; there are still 

areas of the country where coordinated care is not 

available; there are still doctors who rely on infor- 

mation they learned in medical school decades ago; 

there are still unanswered research questions. 

At this milestone, our 30th anniversary, we stand 

at a moment of opportunity as a result of the dedication 

of our volunteers and our Board of Directors; 

our Professional Advisory Board and our Scientific 

Advisory Board; and our financial supporters. With 

your continued commitment, we can advance our 

platform exponentially in the coming years. 

The NMF has a long history of funding life-saving 

research, which has culminated in its current robust 

research program. This program funds numerous 

grants, many of which include multi-year studies 

focused on a better understanding of Marfan syndrome 

and related disorders. Knowing that the cost 

of research is greater than any other program the 

NMF initiates, the Foundation aggressively raised 

monies over the past several years to establish the 

resources necessary to support these projects. In 

2011, the clinical trial ancillary studies, fellowship 

grant program, aortic surgery studies and international 

research symposium continued to draw on 

these previously raised funds, resulting once again 

in a planned deficit. 

You are part of our community, our family; you 

give us courage; you give us hope. We thank you 

for your support and promise to continue to work 

as hard as we can to accomplish in the next five 

years what took decades to accomplish before. 

Jon Tullis Carolyn Levering 

Chair President & CEO

Research 

Then: 

In 1989, the NMF awarded its first research grant 

for $3,000 to Dianna J. McGookey (now Milewicz), 

MD, PhD, and Peter Byers, MD, University of 

Washington, for their study, Abnormalities in 

Fibrillin Observed in Cells from People with the 

Marfan Syndrome. 

2 | Annual Report July 1, 2010 – June 30, 2011

Francis Collins, MD, PhD 

Research 

Now: 

The NMF spent nearly $1 million in research 

this year. 

Large-scale research is expensive. For a small organization, 

making an impact to find a cure requires 

working smart and “punching above our weight.” 

Our approach is to award seed money for specific, 

meritorious projects with the help of our Scientific 

Advisory Board. Through these projects, scientists 

develop preliminary research data, which they then 

leverage to compete for government-sponsored 

and other grants. During this fiscal year, the NMF 

funded close to $1 million in research: 

Faculty Grants: $125,000 

Fellowships: $175,000 

Valve Sparing Study: $40,400 

Studies Ancillary to Clinical Trial: $135,078 

Target Grants: $500,000 

Congratulations to the National Marfan Foundation on your 30th 

anniversary. Your efforts show what can be accomplished when the 

scientific and disease advocacy communities work together toward a 

common goal. Marfan syndrome is an outstanding example of how 

basic research—the discovery that a fibrillin-1 (FBN1) mutation can 

lead to harmful levels of transforming growth factor beta (TGF-ß) in 

the lungs, aorta, and heart valves—can open the door to new treatment 

possibilities. Best wishes to everyone at the NMF. 

– Francis Collins, MD, PhD 

Director, National Institutes of Health 

Annual Report July 1, 2010 – June 30, 2011 | 3

Victor A. McKusick Fellowship Awards 

Providing support for young physicians and scientists 

embarking on a training period in Marfan 

syndrome and related disorders research. 

$100,000 Mark Lindsay, MD 

Johns Hopkins Hospital 

2-year Fellow-to-Faculty Grant: 

Second Heart Field Development 

Underlies Proximal Aortic 

Aneurysm in Marfan Syndrome 

NMF Faculty Grant Awards 

Providing funding on an annual basis to physicians 

and scientists undertaking specific research studies. 

$100,000 Alison Frand, PhD 

University of California, 

Los Angeles 

2-year Faculty Grant: 

Regulation of the Fibrillin-1-like 

protein of C. elegans 

$50,000 Daniel Rifkin, PhD 

New York University 

1-year Faculty Grant: 

Matrix Hierarchies in Marfan 

syndrome and Related Disorders. 

$100,000 Ronald V. Lacro, MD 

Children’s Hospital Boston 

Clinical Trial Ancillary Grant: 

Marfan Quality of Life Ancillary 

Study, An Ancillary Study to the 

PHN Marfan Trial of Beta Blocker 

Therapy (Atenolol) vs. Angiotensin II 

Receptor (Losartan) in Individuals 

with Marfan Syndrome 

$40,000 Hal Dietz, MD 


Clinical Trial Ancillary Grant: 

Circulating TGFß Levels in Marfan 

Syndrome 

4 | Annual Report July 1, 2010 – June 30, 2011 

Ronald V. Lacro, MD

Clinical Trial: 

Losartan vs. Atenolol in Patients 

with Marfan Syndrome 

Aortic enlargement, the life-threatening aspect of 

Marfan syndrome is the focus of this federallyfunded 

clinical trial, which is examining which of 

two drugs is better at slowing the aortic growth. 

After four years of recruitment, we achieved an important milestone 

in February 2011 when we enrolled the 608th and final subject for 

the National Institutes of Health (NIH) Marfan trial, which compares 

the effects of atenolol and losartan in children and young adults with 

Marfan syndrome. The results of this trial, expected in 2014, will 

improve treatment and long-term outcomes for people living with 

Marfan syndrome. We are grateful to the National Marfan Foundation 

for providing vital financial assistance to patients and families who 

otherwise would not have been able to participate in this trial. The 

NMF has also provided essential funding to allow us to perform several 

ancillary studies, including two studies that will measure quality of 

life and circulating TGF-beta levels in subjects enrolled in the NIH 

Marfan trial. 

– Ronald V. Lacro, MD 

Department of Cardiology 


“The efforts of the National Marfan Foundation were 

instrumental in the recruitment of more than 600 

children and young adults with Marfan syndrome into 

an NIH-sponsored study. Because of the Foundation’s 

outreach, individuals with Marfan syndrome, their 

families, and their health care providers will be better 

informed about effective treatment options. We 

applaud the Foundation for providing a model of 

how patient groups and researchers can work together 

to answer critical health care questions.” 

Susan B. Shurin, MD 

Acting Director 

National Heart, Lung, and Blood Institute of the 

National Institutes of Health 


Multi-Center Study: 

Aortic Valve Operative Outcomes in 

Marfan Patients 

Once the aorta enlarges to a specific threshold, an 

operation is necessary to repair it before a potentially 

fatal rupture. This aortic surgery is the lifeline 

for people with Marfan syndrome. To better 

assess if valve replacement or valve-sparing aortic 

surgery produces better outcomes for people with 

Marfan syndrome, the NMF and Baylor College 

of Medicine are collaborating on a multi-center 

study. The study completed patient enrollment in 

November 2010 and is currently in the follow-up 

data collection phase. 

This study is of significance for patients with Marfan syndrome who 

are trying to decide if they want to undergo an aortic valve sparing or 

a mechanical valve replacement surgery on an aortic root aneurysm. 

We have already found that many institutions throughout North 

America and Europe can carry out either procedure with 1% or less 

mortality. Without question, the short-term durability of aortic valve 

sparing in Marfan patients is excellent. Our hope is, with appropriate 

funding, the longer-term evaluation of this group of patients who 

underwent aortic valve sparing will be able to determine the medium 

and long-term durability. Without the support of the National 

Marfan Foundation, this important study could not and would not 

have taken place. 

– Joseph S. Coselli, MD 

Cullen Foundation Endowed Chair 

Baylor College of Medicine, Division of 

Cardiothoracic Surgery 


Joseph S. Coselli, MD 

International Symposium 

Approximately 120 researchers from five different 

continents were in attendance for the 8th International 

Symposium on Marfan Syndrome and 

Related Disorders held in Virginia, September 

11–14, 2010. The NMF worked closely with the 

program committee to coordinate the meeting, 

which featured 65 scientific presentations and 

several panel discussions. 

This conference brought together clinicians and 

scientists at a key moment in the evolution of our 

understanding of these disorders. During the last 

decade the transition of thinking about Marfan 

syndrome has changed the research and treatment 

landscape. This meeting brought together people who 

have contributed to the intellectual transformation and 

those who see its applications in other disease models. 

With the increased communication through electronic 

resources, one might think that small meetings of this 

type would diminish in both number and significance. 

But to sit and participate in the meeting, to watch the 

interactions and intense discussions of data and ideas, 

and to see the evolution from passive observer to active 

involvement shows that there is nothing like the small 

group meeting to build enthusiasm and excitement 

and to drive research in ways in which more passive 

interactions fail. This meeting brought out the best 

in the attendees and the best in the science. 

– Peter H. Byers, MD 

Departments of Pathology and Medicine 

(Medical Genetics), University of Washington 


Advocacy 

Then: 

1994 marked the first of nine times that an NMF 

member delivered spoken testimony on behalf of 

the Foundation. Since then, the NMF also has 

established a successful track record in obtaining 

Appropriations Bill Report Language in the House 

and Senate Appropriations Bills for Labor, Health 

and Human Services, having achieved this nearly 

20 times. 


Advocacy 

Now: 

Teams of NMF members visit Capitol Hill every 

year to educate legislators and staff about Marfan 

syndrome and the Foundation. During our Lobby 

Day in July 2010, four teams consisting of sixteen 

NMF members made over 25 visits to congressional 

offices. In addition to sharing personal stories, they 

promoted the following issues: 

• $35 billion for the NIH in FY2011 

(12% increase) 

• NIH support for Marfan syndrome research 

• Legislation allowing rare disease patients to 

receive compensation for participation in 

clinical trials without that compensation being 

included in their income calculation that 

determines eligibility for Supplemental Social 

Security Income and Medicaid. 

The opportunity to meet with our legislative representatives is an empowering 

feeling. The representatives hear our personal stories and can see the visual 

impacts of Marfan syndrome on our bodies and hear about our emotional 

battles, not only with our diagnosis, but also with receiving adequate healthcare. 

My son Daniel, 11, shared how participating in the federally-funded 

Marfan clinical trial essentially has “saved his life;” this made an important 

impact on this audience when asking for extensions for NIH research. Lobby 

day puts a face on Marfan syndrome and related disorders. We are no longer 

just voters; we are people affected by a serious syndrome who need the full 

commitment of the legislature in funding for our future health. 

– Amy Speck, Knoxville, MD 

Mid-Atlantic Chapter members in front 

of the Capitol building. 


Education and 

Awareness 

Then: 

In 1986, Marfan syndrome was in the media spotlight 

following the death of U.S. Olympic volleyball 

captain Flo Hyman. Coverage in Sports Illustrated 

and on Good Morning America resulted in 3,000 

letters from people who wanted to know more 

about the condition. 


Country music star 

Jason Aldean was one 

of the celebrities who 

supported the NMF in 

the Chase Community 

Giving campaign. 

Social Media Campaign Impact 

• Social media release reached an estimated 

audience of more than 16 million. 

• i-PSA campaign reached more than 

8 million unique web viewers. 

• Visitors to the NMF website increased 

by 50 percent during the two month 

campaign. 

Education and 

Awareness 

Now: 

Technology and the internet are helping the NMF 

reach audiences in the millions. Our major driver 

this year in education and awareness was the 

publication of new diagnostic criteria for Marfan 

syndrome in the Journal of Medical Genetics. 

Created by an international panel of experts, the 

new diagnostic process—which continues to be 

based primarily on a multi-system clinical examination—provides 

patients with a more accurate 

diagnosis and better medical management, whether 

they have Marfan syndrome or a related disorder. 

This year, the NMF, which helped fund the development 

of the new criteria, focused on initiatives 

to make both physicians and consumers aware of 

it. With a grant from the U.S. Centers for Disease 

Control and Prevention (CDC), the Foundation 

created a mobile application for smartphones, 

thus putting the criteria and the diagnostic process 

directly into the hands of doctors. 

In addition, the CDC grant enabled the Foundation 

to launch its first social media campaign, which 

featured a social media press release, internet public 

service announcement (i-PSA), a blogger campaign 

and banner ads on health and parenting websites. 

The NMF leveraged social media for another 

awareness and fundraising campaign this year 

through Chase Community Giving. Our ability to 

leverage our Facebook fans and Twitter followers, 

as well as our email network and proprietary social 

network, NMFconnect, increased visibility for the 

NMF and Marfan syndrome, and resulted in a 

$45,000 donation from Chase Bank. 


Support 

Services 

Then: 

The NMF published the first comprehensive 

booklet on Marfan syndrome in 1984. Written by 

Reed E. Pyeritz, MD, PhD, and Julia Conant, MD, 

the booklet provided a comprehensive description 

of the disorder, including medical, social and 

psychological aspects, diagnosis and treatment 

options. In that same year, the Foundation published 

its first issue of its newsletter, Connective Issues. 

Nearly 1500 people received the first issue of the 

newsletter. In 1991, the NMF launched its tollfree 

helpline, 800-8-MARFAN, and five years later, 

debuted its website, www.marfan.org. 

12 | Annual Report July 1, 2010 – June 30, 2011 Ethan Johns

I’d like to thank you from the bottom of my 

Marf heart. I am frankly stunned at the attention 

you’ve given my situation. I had no idea that 

resources like this were so freely available and so 

easily accessible. I will most certainly share the 

information you sent me with my vascular surgeon. 

I am extremely impressed with the resources and 

information made available via the NMF website. 

Proud to be a member. 

– Jerry M. Meek, Buckley, WA 

Support 

Services 

Now: 

The NMF has successfully retained its personal 

connection with the Marfan syndrome and related 

disorders community, and has extended its reach 

through online support groups and NMFconnect, 

the Foundation’s social networking platform. 

People who are in need of life-saving information, 

guidance in dealing with schools and doctors, or 

just a shoulder to cry on can contact the NMF’s 

professional staff, including a licensed social worker 

and a registered nurse, for customized assistance. 

Through chapters, network groups, peer-to-peer 

support and social networking, connections within 

the Marfan community are always available. 

The NMF’s Information Resource Center provides 

year-round support to the Marfan syndrome and 

related disorders community. The information 

provided: 

• Helped them better understand Marfan 

syndrome or a related disorder (96%) 

• Addressed their specific question/concern 

(89%) 

• Increased their knowledge about management 

(86%) 


Annual Conference 

Then: 

In 1981, Reed Pyeritz, 

MD, PhD, organized the 

first meeting of health 

professionals, people with 

Marfan syndrome and 

family members. 


Annual Conference 

Now: 

The NMF’s 26th Annual Conference was co-hosted 

by the University of Texas Health Science Center- 

Houston and Baylor College of Medicine. Nearly 

500 people, including patients, family members 

and medical professionals, were on-hand. NMF 

members were able to hear the latest medical 

information from experts in the field, learn about 

the new scientific research, take advantage of the 

conference’s free evaluation clinic, and meet with 

people from all over the country who are just like 

them. Nearly 150 children and teens participated 

in age-appropriate activities that were educational, 

esteem-building and fun. In addition, all attendees 

joined the NMF in honoring the renowned cardiovascular 

surgeon Denton Cooley, MD, with the 

Foundation’s Antoine Marfan Award. 

There is definitely something soothingly therapeutic about 

talking with and interacting with others who are familiar 

with your particular struggles… Being at the conference 

helped me internalize our situation and look at it more 

precisely… and [become] more eager to take care of ourselves 

with the information we learned. 

– Meagan Hamby, Stockton, CA 

Mother of Desmond, 6, who has Marfan syndrome 

Lee Baart 


National Volunteer 

Network 

Then: 

The Northern California Chapter, the longest 

continuing group of the NMF, was founded in 

1982 by Deeahna Lorenz and Holly Sparkman. 

Since its inception, the chapter has grown to 

include more than 500 individuals and families 

affected by Marfan syndrome and related disorders. 


Rachel Epperson, of San Antonio, TX, 

coordinates an annual event, Strides for 

Sarah, in honor of her daughter Sarah, who 

has Marfan syndrome. Rachel is one of the 

95 volunteers around the country who 

organized awareness and fundraising events 

to support the NMF this year. 

Sarah and Rachel Epperson 

National Volunteer 

Network 

Now: 

More than 50 chapters, support groups and network 

groups from coast-to-coast provide local support 

to the Marfan syndrome and related disorders 

community. The newest chapters are the Mid- 

Atlantic and North Dakota Chapters. 

These local groups, along with individual NMF 

members throughout the country, also are very 

active in carrying out the NMF’s mission in their 

local area. They provide educational activities for 

the public and conduct outreach to doctors and 

hospitals, bringing life-saving information to those 

who can make a difference. They also conduct 

fundraising activities—from walk-a-thons and 

casual dress days to corn maze fundraisers and 

comedy nights—which contribute important funds 

that support the NMF’s mission. We are extremely 

grateful for the energy, creativity and enthusiasm 

of our volunteers. Despite their medical challenges, 

they work hard for the NMF year after year, and 

we couldn’t be more proud. 


NMF Gala 

Then: 

In 2000, the NMF held its first major fundraising 

gala. Heartworks: The Marfan Gala, which was 

held at the Liz Claiborne showroom in Manhattan, 

raised nearly $200,000. Wayne Isom, MD, Weill 

Cornell Medical Center, was awarded the NMF’s 

first Hero with a Heart Award. 


Since my daughter Cassie was diagnosed with 

Marfan syndrome at birth five years ago, the 

NMF has played a huge role in our lives. The 

NMF has helped us connect with other families 

affected by Marfan syndrome, kept us up-to-date 

on research, answered any questions we had about 

Cassie’s medical issues, and talked to us about 

what we were going through as we adjusted to 

Cassie’s diagnosis. The NMF can’t do all its 

amazing work without funds, and that’s why 

the Gala—the year’s biggest fundraiser for the 

NMF—is so important to families with Marfan 

syndrome. We are happy to do whatever we can 

to help support the NMF’s work—it has been 

nothing short of life-changing for Cassie and for 

so many kids like her. 

– Alix McLean Jennings 

Madison, NJ 

Cassie Jennings 

NMF Gala 

Now: 

The 11th Annual Heartworks gala was held in 

New York City in April 2011, celebrating Hero 

with a Heart Award recipients, Jeff LeSage, U.S. 

National Managing Partner, KPMG, and St. Jude 

Medical. Nearly $1 million was raised to support 

the NMF’s core programs and services. Mayor 

Michael Bloomberg, the honorary chair, led the 

celebration, which was emceed by WNBC-TV’s 

Jane Hanson and Janice Huff. NMF Board member 

Karen Murray, President, VF Sportswear, was the 

gracious corporate host. 

This year, we also celebrated the 3rd Annual 

Heartworks St. Louis and the 4th Annual Heartworks 

Westchester. We also were thrilled to expand 

Heartworks to Atlanta in November 2010. 

NMF Professional Advisory Board Chair Alan 

Braverman and his wife, Becky, were our hosts in 

St. Louis, where we honored Dr. Lawrence Lenke 

and Dr. Keith Bridwell, orthopedic surgeons at 

Washington University School of Medicine. 

Our hosts in Westchester were NMF members 

Barbara and Jonathan Lerman, who spearhead the 

event each year in honor of their daughter Sydney, 

now eight years of age, who has Marfan syndrome. 

In Atlanta, NMF members Steve and Rosalinda 

Rayman hosted the event in honor of their nephew 

Michael Murray, who has Marfan syndrome. At 

this gala, Dr. Randy Martin received a Hero with 

a Heart Award. 


Our Generous 

donors 

The NMF extends sincerest gratitude to all those who 

contributed financially during our 2011 fiscal year. We 

list here those who contributed amounts of $1,000 or 

more from July 1, 2010, through June 30, 2011. 

Platinum Circle 

$1,000,000 and above 

Anonymous 

Silver Circle 

$250,000.00 – $999,999 

Smilow Family Charitable Trust 

Bronze Circle 

$100,000.00 – $249,999 

Centers for Disease Control and 

Prevention 

KPMG LLP 

Mrs. Faye Morford 

Vital Projects Fund, Inc. 

Benefactor 

$50,000 – $99,999 

Mr. & Mrs. Benjamin Carpenter 

Centene Corporation 

Randy & Susan Falco 

St. Jude Medical Foundation 

Patron 

$25,000 – $49,999 

Allen and Company, Inc. 

American Heart Association, Inc. 

American Legion Child Welfare 

Foundation 

Frank J. Antun Foundation 

The Chu and Chan Foundation 

Estate of Michael Eide 

Alix McLean Jennings, 

Team Cassie Half-Marathon 


Gary & Mary Kauffman 

Macy’s and Bloomingdales 

Chase Community Giving 

William J. and Dorothy K. 

O’Neill Foundation 

The Sholton Foundation 

VF Sportswear 

Estate of Joan Wheeler 

Nick & Whiteley Wheeler 

Sponsor 

$10,000 – $24,999 

Airlie Foundation 

Mr. & Mrs. Scott Avitabile 

Mr. & Mrs. Jerome Brotherton 

Colliers International 

DePuySpine, Inc. 

Ernst and Young LLP 

General Atlantic Service Co. LLC 

Mark & Emily Glasberg 

GQ Magazine 

Alexandra McLean Jennings & 

Ezra Jennings 

Mr. & Mrs. Allan Larson 

Mr. & Mrs. Jerry Lerman 

The Levy Group 

Lord & Taylor 

Merck & Co., Inc. 

Karen Murray & Harry Steinmetz 

Mrs. Barbara Neustadt 

Neuco, Inc. 

NMF Teen Challenge 

Northern Illinois Chapter of the 

NMF 

Peerless Clothing 

PennJersey Chapter of the NMF 

Piedmont Heart Institute 

PriceWaterhouseCoopers LLP 

Randa Accessories 

Steve & Rosalinda Rayman 

Ms. Ann Reinking 

Ross Stores, Inc. 

Mrs. Edmond Safra 

Lawrence & Robin Sapanski 

Smart Apparel U.S. 

Glenn Stidham, 12th Annual 

JAFGO Golf Outing 

The Texas Heart Institute 

Thomson Reuters Services Inc 

Mr. Jon Tullis 


University of Washington 

Medical Center 

Verizon Foundation 

Weill Cornell Medical Center, 


Supporter 

($5,000 – $9,999 

Ms. Ann Alburger 

Barnes-Jewish Hospital 

Belk, Inc. 

Mr. and Mrs. Robert Berklite, 

Mid-Atlantic Golf 

Century 21 Associates Foundation 

The Charmer Sunbelt Group 

Mr. & Mrs. William Conger 

Michele Cripps, 

7th Casino Night 

Deloitte 

Jonathan & Wendy Dulman 

Emerson 

Rachel Epperson, 

2 Strides for Sarah 

Express Scripts 

Foot Locker Foundation, Inc. 

Mr. Eric Frank 

Mr. & Mrs. Charles Galli 

Heart of Iowa Chapter of the 

NMF 

Mr. Chris Heaney 

Adam & Amy Leibner 

The Leir Foundation 

Jonathan & Barbara Lerman 

Jean MacLeay & James Oliver 

Doug & Virginia Marzonie 

Harold & Ellen McElhinny 

David & Sheila McLean 

Mr. & Mrs. Robert Menschel 

New England Motor Freight, Inc. 

Andrew & Susan Roos 

Peter & Elizabeth Roos 

R.P. Lumber 

Ron & Pam Rubin 

Syms Foundation 

Phyllis R. Tirmenstein, 

Roland Quest Memorial Fund 

TJX Companies 

Mr. & Mrs. Michael Tracey 

Troob Capital Management 

Keith & Catherine Turner 

Viacom, Inc. 

Vista Equity Partners 

David & Tracy Warren 

Dr. & Mrs. Lawrence Lenke 

John & Mary Witte 

Mr. & Mrs. Robert C. Wright 

Partner 

$1,000 – $4,999 

Douglas & Sharon Aach 

Mr. Richard Adamski 

Adelphi University 

Alberici Corporation 

Ally Financial 

Alpha Phi Omega March for 

Marfan 

Drew & Marcia Anderson 

Mr. R. Douglas Barnhart 

The Retina Institute 

Tim & Kristin Barnett 

BASF Corporation 

Mr. & Mrs. Michael W. 

Baumgartner 

Mr. Ron H. Bell, CFA, CIC 

Dr. & Mrs. Charles Berst 

Mrs. Irene Bishop 

Theodore Blackston & 

Rhiannon Kubicka 

The Herb Block Foundation 

Regine Wood Bluestein & 

Jerry Bluestein 

Ms. Barbara Bostian 

Mr. Paul R. Boudreau 

Mr. & Mrs. William Bowman 

Dr. & Mrs. Alan Braverman 

Mr. Eric Braverman 

Keith Bridwell, MD 

Mr. & Mrs. Robert Brooks 

Adam & Shari Brooks 

Mr. & Mrs. Michael Buck 

Kathleen Cadden Fundraiser 

Mr. Matthew Cahill 


Associates, P.C. 

Glenn & Stacy Carr 

Carris Reels, Inc. 

Mr. William Casperson 

Karen Castellano & 

Jerry Newirth 

Mr. Anthony Castellanos & 

Dr. Josephine Grima 

Casual Male Retail Group, Inc. 

Paul & Dorothy Cayo 

Estate of Marie Cenac 

Chazen Foundation 

Mr. & Mrs. Raymond Chevallier 

Peter & Brenda Christie 

CI-AMA 

Cincinnati Children’s Hospital 


Dr. & Mrs. Jim Clanahan 

Ms. Kathryn Clune 

Mrs. Carol Cofone 

J. H. Cohn Foundation, Inc.

Mr. & Mrs. Jeffrey Cokin 

Conger Family Foundation 

Heidi Connolly, MD 

Mrs. Judith Consigli 

Ms. Gail Cooke 

3rd Cookson Snow Trek 

Ms. Julie Damore 

Estate of Edward Davis 

Mr. Michael J. Day 

Christy Dermer Golf Outing 

Urmil & Mayuri Desai 

Mr. Peter Diamond 

Diesel Fuel Injection, Inc. 

Mr. Fulvio Dobrich 

Christopher & Susan Dolson 

Doneger Group 

John & Yvette Dubinsky 

Mr. Eric Dusansky 

Sidney and Mildred Edelstein 


E. S. Originals 

Esquel Group 

Estate Motors 

Ms. Patricia Estrada 

Ms. Ellen Farbstein 

Mr. Mark Ferguson 

John & Alison Ferring 

Fishman and Tobin 

Mr. Mark Flanagan 

Walter & Leona Friedrichs 

Lauren & Robert Gellert 

Ms. Judy Gibaldi 

Michael Goldstein & 

Therese Vandenberg 

Brett & Lauren Gould 

Mr. & Mrs. Alan Grainger 

Mr. Russell Grandinetti 

Mr. & Mrs. Stanley Green 

Ms. Karen Greenberg 

Robert & Cindy Greenstein 

Mr. & Mrs. John Grimshaw 

Mr. Stephan Gross 

Ms. Bernadine Hagnauer 

Lisa Hajj Birthday Fundraiser 

Mr. Randy Hall & 

Dr. Freda Lewis-Hall 

Albert & Rita Harris 

Mr. & Mrs. Paul Hartmann 

Mrs. Phyllis Hawkins 

Mr. Daniel Heflin 

Mark & Barbara Heller 

Ms. Dorothy Helphand 

Mr. & Mrs. David Hickman 

Mrs. Anne H. Hinds 

Rodney & Joy Hoffman 

Roy & Sandra Hoffman 

John Houston & Kathy Read 

David & Tisha Hudspeth 

Mr. Christopher Ihde 

Infranco Moore Group Inc. 

Emma Ingraham, 

Hang-a-Heart Fundraiser 

Iona College 

L. Jent 

Andruw & Nicole Jones 

Meaghan Joyce. 

Sweet 16 Fundraiser 

Mr. & Mrs. Endy Junan 

Kaiser Permanente Foundation 

Sanford & Roslyn Kalb 

Adam & Kate Kauffman 

Mr. Bob Kavner 

Mr. Tom Kazmark 

Brett & Sherrill Kellam 

Kipling 

Mr. Kenneth Kolker 

Tricia & Ronald Kordalski 

Seth & Deena Kornblau 

Dr. & Mrs.Yamil Kouri 

Charles & Kristen Krusen 

Evan & Amy Lieberman 

Tom & Betty Leininger 

Ms. Carolyn Levering 

Jeffrey & Marsha Levine 

Marc & Jodi Lichtenstein 

David & Donna Litvinsky 

Mr. Antonio G. Lobon 

Loeys-Dietz Syndrome 


Mr. Robert E. Lotwin 

Richard Madris 

Kathy Magee Quilt Fundraiser 

Ms. Virginia Mainiero 

Majesh Makan, MD 

Mr. & Mrs. Daniel Makanoff 

Ms. Debra Malbin 

Ms. Laurie Malman 

Charles & Ronnie Manna 

Dr. & Mrs. Randy Martin 

Jeannie Marve, 

Birthday Fundraiser 

Mr. Marco Masotti 

Massachusetts Chapter of the 

NMF 

Steven & Toby Mayer 

McDonough Pediatrics 

McKesson Corporation 

Ms. Debra McMillan 

Medtronic Spinal and Biologics 

Mercedes-Benz of South Atlanta 

Ms. Victoria Meyer 

Charles & Mary Jane Michael 

Mr. Bruce Michelich 

Dr. & Mrs. John Middelkamp 

Mr. Ira Millman 

Kathleen Mimnagh, MD 

Missouri Baptist Medical Center 

Model Service Agency LLC 

Mrs. Dorothy Moore 

E. A. Moos Foundation 

Ms. Lisa Moran 

Edward & Kristin Morse 

Mr. Rasheed Muhammed 

Sharon Nasutovicz 

Hang-a-Heart Fundraiser 

Mr. & Mrs. David Neal 

Mr. Paul Neustadt 

Bill & Mary Neustadt 

Jon & Julie Neustadt 

Mr. Rocco Nisivoccia 

Linda Sue Pfarrer Nortillo 


Mrs. Rosemarie Oliveri 

OZ Management LP 

Julie & Adam Paget 

Paramount Tall Club of 

Chicago 

Yogesh Patel, MD 

Jonathan “Superman” Pawell 

Memorial Fundraiser 

Perry Ellis International 

Physical Rehabilitation Institute 

Mr. & Mrs. Michael Pohly 

Mr. & Mrs. Glenn Pollner 

Portland Network Group Crab 

Feed Fundraiser 

Mr. & Mrs. Paul Puleo 

Ms. Judith Ricca 

Dan & Mary Riew 

Ms. Julia Ripperger 

Dr. Paul Robiolio & 

Ms. Aixa Martinez 

Hon. & Mrs. Alan Rockoff 

Mr. & Mrs. Randy Rogers 

Mary Roman, MD 

Theo T. and Hilda Rose 

Foundation, Inc. 

The Rothstein Family 

Mr. & Mrs. Wade Ruddock 

Ms. Sherry Ryan 

Mr. Peter Sachse 

Sekhar Sankaran, MD 

Ms. Christine Sarkisian 

Mr. Paul Savage 

Ms. Teresa Schell 

Robert & Susan Schwarzenbek 

Ms. Joan Scott 

Mr. & Mrs. Terence Seery 

Mr. Steven Shapiro 

Mr. & Mrs. Adam Sholton 

Mr. & Mrs. Paul Sholton 

Gregorio & Kathy Sicard 

Mr. & Mrs. John Small 

Michelle Smith, 

FirstGiving Fundraiser 

Mr. & Mrs. Howard Socol 

Daniel Speck, 

Heart and Soul Concert 

Mr. & Mrs. Jeffrey Spiegel 

John & Catherine Spillman 

SSM Cardinal Glennon 

Children’s Medical Center 

St. Louis Children’s Hospital 

David Striker, MD 

Mrs. Rebecca Stroda 

Sucherman Consulting Group, Inc. 

Nancy Sumberaz, RPh, MBA 

Mr. William Sweeney 

Tall Clubs International 

Mr. Franklin Terkelsen 

Mr. Lee Terrill 

Mr. & Mrs. Jeffrey Tochner 

Mr. Carl Toriello 

Travelgirl Magazine 

Peter & Marjorie Troob 

Douglas & Robyn Troob 

UBS Financial Services Inc. 

Mr. & Mrs. Charles Vago 

Mr. & Mrs. Michael Van Eekeren 

Mr. Charles Van Gronigen 

Mr. John B. Veihmeyer 

Mark & Karen Visser 

VF Foundation 

Ms. Dara Wagner 

Mr. Arthur Walker 

Ty & Doryn Wallach 

Walmart Community Grant 

Washington University School 

of Medicine, Cardiology 

Division 


of Medicine, Department of 

Orthopedic Surgery 


of Medicine, Division of 



of Medicine, Marfan 

Syndrome Clinic 

Water Protection Inc. 

Weill Cornell Medical College 

Adam & Dawn Weinstein 

Weiser LLP 

Mr. & Mrs. Benjamin Weisman 

Whittier and Associates 

Eric Wika Memorial Car Show 

Evan & Amy Wildstein 

David & Cheryl Williams 

Eric & Susan Wiseman 

Mr. & Mrs. J. Joseph Zimmerman 

Mr. & Mrs. Jeffrey Zinn 

Yoss LLP 


Financial Commentary 

In 2011, the National Marfan Foundation made a 

concerted effort to expand its fundraising strategies 

to provide the resources required for program 

expansion. Increases in contributions, including 

major gifts, event income and other revenue streams, 

resulted in the significant increase in the Total 

Revenue and Gains of $577K over the prior year. 

Contributions increased from $1,450K to $1,692K, 

reflecting a successful investment by the Foundation 

in enhanced fundraising efforts, which included more 

targeted direct mail campaigns and the receipt of a 

grant from the U.S. Centers for Disease Control and 

Prevention (CDC). Membership contributions 

increased from $113K to $124K due to a redesign 

of the membership campaign, which included the 

greater use of e-mail appeals and the expansion of 

online giving. Event proceeds rose significantly, 

from $882K to $1,076K, due to the growing success 

of the three signature annual events and the debut 

of a fourth event in a new city. 

These financial successes, and the resulting increase 

in revenues and gains, enabled the Foundation to 

increase its funding of program services from 

$2,465K to $2,769K, which included enhanced 

education and awareness programs utilizing the 

funding from the CDC grant. The grant provided 

funding for the development of the Foundation’s 

first-ever social media campaign and a mobile 

website for smartphones that put the new diagnostic 

criteria for Marfan syndrome directly into 

the hands of physicians. 

Fundraising expenses increased from $416K to 

$628K in support of the multi-pronged drive to 

increase revenues. The increased expenses reflected 

the debut of the new signature event and the retaining 

of a fundraising firm to provide guidance for the 

enhancement of the Foundation’s direct mail 

campaigns, improvements of the website and an 


increase in e-appeals and online fundraising capabilities. 

In 2011, the NMF’s ongoing commitment to 

funding several multi-year research studies, including 

the clinical trial ancillary studies, fellowship grant 

program, aortic surgery studies and an international 

research symposium, continued to be financed by 

previously raised funds dedicated for these purposes, 

resulting once again in a planned deficit for this 

program. Although this resulted in an overall 

deficit, there was an operating surplus represented 

by an increase in unrestricted net assets of $189K 

for the year. 

In summary, the Foundation continued to support 

several important long-term research studies and 

expanded its education and awareness efforts, while 

securing more than adequate funding for this year’s 

initiatives and establishing new revenue streams, 

including the newly launched planned giving initiative, 

to help secure these programs for the future. 

REVENUES 

FY 2011 

EXPENSES 

FY 2011

Statement of Activities 

Year Ended June 30, 2011 and June 30, 2010 

Unrestricted 

Temporarily 

Restricted 

Year Ended 

June 30, 2011 

Year Ended 

June 30, 2010 

Revenues and Gains: 

Contributions $ 1,571,097 $ 121,392 $ 1,692,489 $ 1,450,466 

Unrealized loss on land - - - (168,454) 

Memorials 84,707 - 84,707 98,457 

Membership contributions 123,744 - 123,744 112,538 

National Marfan Conference 149,311 14,294 163,605 202,017 

Program revenue 6,590 - 6,590 9,529 

Net investment income 

Events, net of direct expenses of $338,020 and 

127,521 - 127,521 256,092 

$302,211 

Change in value of beneficial interest charitable 

1,076,305 - 1,076,305 881,761 

remainder trust - 99,935 99,935 74,895 

Gifts in-kind 118,991 - 118,991 - 

Net assets released from restriction 631,458 (631,458) - - 

Total Revenues and Gains 3,889,724 (395,837) 3,493,887 2,917,301 

Expenses: 

Program services expenses: 

Research initiatives and grants 1,536,107 - 1,536,107 1,528,552 

Education and public awareness 510,693 - 510,693 287,209 

Patient services and annual conference 721,748 - 721,748 648,773 

Total Program Services Expenses 2,768,548 - 2,768,548 2,464,534 

Supporting services expenses: 

Management and general 304,227 - 304,227 270,285 

Fundraising 627,812 - 627,812 416,228 

Total Supporting Services Expenses 932,039 - 932,039 686,513 

Total Expenses 3,700,587 - 3,700,587 3,151,047 

Increase (Decrease) in Net Assets 189,137 (395,837) (206,700) (233,746) 

Net Assets, beginning of the year, as restated 3,699,844 5,910,733 9,610,577 9,844,323 

Net Assets, ending of the year $ 3,888,981 $ 5,514,896 $ 9,403,877 $ 9,610,577 


Statements of Financial Position 

June 30, 2011 and June 30, 2010 

Assets 


June 30, 2011 June 30, 2010 

Cash $ 904,821 $ 626,887 

Investments 5,856,998 5,378,631 

Pledges receivable, net 1,115,119 2,065,620 

Prepaid Expenses and Other Current Assets 206,288 80,696 

Property and Equipment, net 758,506 790,150 

Beneficial Interest Charitable Remainder Trust 934,479 834,544 

Noncash Contributions - 235,000 

Reserve for Noncash Contributions - (168,454) 

Other Assets 80,071 59,679 

Total Assets 9,856,282 9,902,753 

Liabilities and Net Assets 

Liabilities: 

Accrued liabilities 230,785 112,727 

Grant payable 25,000 - 

Deferred conference income 116,549 119,770 

Other payables 80,071 59,679 

Total current liabilities 452,405 292,176 

Net Assets: 

Unrestricted: 

General 1,730,996 1,609,820 

Board designated 2,157,985 2,090,024 

Temporarily restricted 5,514,896 5,910,733 

Total Net Assets 9,403,877 9,610,577 

Total Liabilities and Net Assets $ 9,856,282 $ 9,902,753 

The NMF's complete audited financial statements for the years ended June 30, 2011 and 2010 may be viewed online at 

www.marfan.org or obtained by writing to the National Marfan Foundation, 22 Manhasset Avenue, Port Washington, NY 11050.

Board of Directors 

2010–2011 

Jon Tullis 

Chair 

Gavin Lindberg 

Vice Chair 

Raymond Chevallier 

Treasurer 

Mary J. Roman, MD 

Secretary 

Susan Falco 

Executive Committee 

Gary Kauffman 


Karen Murray 


Scott Avitabile 

Maya Brown-Zimmerman 

Steven Crombe 

Teri Dean 

Cory Eaves 

Barbara Heller 

Jerry Lerman 

Kathleen Mimnagh, MD 

Diane M. Sixsmith, MD 

Nancy Sumberaz 

Benjamin Weisman 

Priscilla Ciccariello 

Chair Emeritus 

Michael Weamer 

Board Advisor 

Annual Report Credits 

Graphic Design: Alexandra Dubow 

Photography: 

Timothy D. Joyce Photography Cover, 

pages 1, 4–5, 6–7, 14–15, back cover 

National Institutes of Health Pages 2–3 

NMF Mid-Atlantic Chapter Pages 8–9 

National Marfan Foundation Inside front 

cover, pages 10–11 

Johns Hopkins Page 14, Reed Pyeritz 

Rachel Epperson Pages 16–17 

Rick Guidotti, Positive Exposure Pages 18–19 

Professional Advisory Board 


Dianna Milewicz, MD, PhD 

Chair 

University of Texas Health Science Center 

at Houston 

Alan C. Braverman, MD 

Washington University School of Medicine 

Peter H. Byers, MD 

University of Washington School of Medicine 

Duke Cameron, MD 


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 


Richard B. Devereux, MD 

New York Presbyterian Hospital-Weill Cornell 


Hal Dietz, MD 


Sylvia A. Frazier-Bowers, DDS, PhD 

University of North Carolina at Chapel Hill 

Ronald V. Lacro, MD 


Irene 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 


Vincent L. Gott, MD 

Member Emeritus 


Victor A. McKusick, MD 

(1921–2008) 

Scientific Advisory Board 


Bjorn Olsen, MD, PhD 

Chair 

Harvard Medical School 

Craig T. Basson, MD, PhD 

Novartis Institutes for Biomedical Research 

John C. Carey, MD 

University of Utah Health Sciences Center 

Bruce D. Gelb, M.D. 

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) 

Senior Staff 

Carolyn Levering 

President & CEO 

Judy Gibaldi 

Senior Vice President, 

Operations & Finance 

Josephine Grima, PhD 

Vice President of Research & 

Legislative Affairs 

Jennifer Buffone, LCSW 

Director of Support Services & 

Volunteer Development 

Jennifer Grignoli 

Director of Development 

Maggie Hogan 

Director of Foundation Relations & 

Conference Planning 

Jonathan Martin 

Director of Education & 

Awareness Programs 

Eileen Masciale 

Consulting Director of Communications 

Cathie Tsuchiya 

Administrative Director & 

Local Fundraising Coordinator

22 Manhasset Avenue 

Port Washington, NY 11050 

800-8-MARFAN 

516-883-8712 

www.marfan.org Brett and Erin Van Endel and their daughter, Emri

ANNUAL REPORT 2011 - National Marfan Foundation

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