National Marfan Foundation Annual Report
2012
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, treatment and quality of life through: •
A grant and fellowship program for Marfan syndrome and related disorders
•
Medical and scientific symposia
•
Advocacy for federal funding and policies that support our 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
•
General public
Support Services Helping individuals and families with Marfan syndrome and related disorders through: •
Our help center, which provides access to personalized service through a toll-free number, 800-8-MARFAN, and email
•
Our nationwide volunteer network, consisting of chapters, community groups, support groups and individual volunteers, which carries out the Foundation’s mission at the local level
•
Our Annual Family Conference
•
Our newsletter, Connective Issues, and website, www.marfan.org Front cover: Dominga Noe and Michelle Smith Right: Erin and David Donato
Dear Friends, We are proud to share with you our 2012 annual report, which showcases our commitment to creating a brighter future for everyone living with Marfan syndrome and related disorders. Through education, patient support, and research, we help people live successfully with these conditions by providing them with accurate, up-to-date information, creating a supportive community, and advancing the research that will enable them to live longer and enjoy a better quality of life. And as we build a patient community that is equipped to meet and overcome medical challenges, we also foster a better informed medical community through the medical exhibits we attend, the hospitals we visit, and the coordinated care clinics that we help to facilitate. Individuals and families with Marfan syndrome and related disorders are better cared for because of our work—whether it is our outreach to emergency physicians at the American College of Emergency Physicians meeting or the doctors we worked with in Florida and New York to establish new Marfan clinics. While we offer the utmost support for families to live well today, we also remain committed to research, which provides so much hope for the future. This year, we brought together scientists from all over the world to critically assess current therapies, identify opportunities, and stimulate new thinking about the treatment of heritable disorders of connective tissue, such as Marfan syndrome. And not only do we facilitate collaboration, but we also support it—this year, we tripled our grants to faculty members and doubled our awards to young investigators (fellows). In the unprecedented number of proposals we received, there were many who were new to our field, demonstrating the growing interest in Marfan syndrome and related disorders. For patients, this
is good news, as more and more researchers are seeking solutions for their medical challenges and they know we are here to support them. Our members enthusiastically join us as we fight for victory over Marfan syndrome and related disorders. They come together to create local fundraising and awareness events that help us advance our mission from coast to coast. They come together at our annual family conference, where they not only learn from the experts, but also provide great support to each other. And, they come together year-round, engaging in online communities so that no one with Marfan syndrome or a related disorder ever feels isolated and alone. So many people have been instrumental in the successes of this year: our volunteers and members; our Board of Directors, Professional Advisory Board, and Scientific Advisory Board; and our staff. As part of this strong community, we thank you for your commitment to our mission of education, research and support.
Raymond Chevallier Chair
Carolyn Levering President & CEO
Research We tirelessly advance the research for treatments that save lives and dramatically enhance the quality of life for affected people. Through our research grant program, we’ve strengthened a growing community of expert researchers committed to victory over Marfan syndrome and related disorders. We push the government to fund the research that will improve and save lives. We facilitate the sharing of knowledge about Marfan syndrome and related disorders through conferences, symposia, and partnerships with governmental agencies and other health organizations. We continue to move forward research for both Marfan syndrome and related disorders because advances in fighting Marfan syndrome helps us take steps toward victory in fighting related disorders—and vice versa.
2 | Annual Report July 1, 2011 – June 30, 2012
Key Accomplishments Large-scale research is expensive. For a small organization, in order to make an impact, we seek 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. We are driving research forward through our generous grant program. Because of the grants we awarded this year, eight critical studies that will enhance patient care are progressing. In addition, we obtained new funding to diversify and expand our grant programs in the future, created a multi-year agenda to advance our goals, and converted it into a $5 million commitment of support from Bloomberg Philanthropies.
$1,234,291 Awarded in Research Grants Funding
Lynn Y. Sakai, PhD, Shriners Hospital and Oregon Health & Science University
8 Studies
Annual Report July 1, 2011 – June 30, 2012 | 3
Education We always have the latest and most accurate information, and we educate everyone—from patients and families to medical professionals and the general public—about Marfan syndrome and related disorders. We foster a better informed medical community through the medical exhibits we attend, the hospitals we visit, and the coordinated care clinics that we help to facilitate. Our mail and email outreach keeps people up-to-date with the latest in care, treatment, research, and opportunities to help. Our website is a great resource for our entire community, and it’s often the first place newly diagnosed families come to find answers and support. Our far reaching media campaign spreads our message globally and saves the lives of those at risk.
4 | Annual Report July 1, 2011 – June 30, 2012
Laura Polcyn with nieces Carolyn and Faith Leavitt
Key Accomplishments We continued to use technology to deliver educational materials to a broader audience in a more cost effective way, including improvements to and promotion of our MarfanDX mobile diagnostic website for healthcare professionals and the creation of The Marfan Question webisodes, consisting of 80+ video Question and Answer clips for patients. Our ongoing collaboration with the Thoracic Aortic Disease Coalition, which we convened, continued to maximize the impact of our Emergency Medicine Campaign by raising the profile of aortic aneurysm and dissection and the genetic factors that place people at risk. A multi-tiered outreach campaign, including attendance at medical professional conventions, email marketing, and media placements brought our messages to professionals and the general public alike.
649,399
46,660
Visits to Marfan.org
YouTube Views
608 1,050 New Fans on Facebook
New Members of Our Online Community
Annual Report July 1, 2011 – June 30, 2012 | 5
Support Services We provide a supportive community for everyone living with Marfan syndrome and related disorders. Individuals, family members, medical professionals, and other healthcare providers can access information about Marfan syndrome and related disorders on our website, over the phone, or via email. Special resources are available for children, teens, parents, teachers, nurses, and other specialized groups and we have extended our reach through online support groups and our own online community. 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 our help center, staffed by a licensed social worker and a registered nurse, for customized assistance.
6 | Annual Report July 1, 2011 – June 30, 2012
Paul D. Sponseller, MD, Johns Hopkins Hospital
Key Accomplishments This year, we focused on strengthening our nationwide clinic network and cultivated relationships with healthcare providers to improve access to quality care. As a result, three new Marfan syndrome and related disorder clinics were added to our Coordinated Clinic Directory with new sites at NYU Langone Medical Center (NY), Joe DiMaggio Children’s Hospital (FL), and Lenox Hill Hospital (NY). In addition, inquiries to our help center continued to rise and grow in diversity. This year we provided patients with up-to-date information on diagnosis, management of their condition, and concerns facing surgery. We also responded to many inquiries related to advocating for children in schools, challenges in growing older with Marfan syndrome and related disorders, and navigating complex insurance and disability claims, just to name a few.
2,178 People served by our help center 1,310 Coordinated clinic directories shared
1,214 Diagnostic and treatment information packets distributed
Annual Report July 1, 2011 – June 30, 2012 | 7
Annual Family Conference For 27 consecutive years, our community has gathered at our Annual Family Conference. During this four-day event, patients and families make connections and have conversations that literally save and improve their lives. Doctors offer superb clinical services free-of-charge during a full day of scheduled appointments and there are educational sessions, medical workshops, and support groups engaging the world’s foremost experts in helping patients of every age and families address their pressing questions. Scientists fly from the far reaches of the globe to present their research and discuss implications with patients and peers alike. Patients and families now often travel hundreds or even thousands of miles to join this annual event to gain life-saving information and life-long friendships.
8 | Annual Report July 1, 2011 – June 30, 2012
Key Accomplishments The 27th Annual Family Conference took place in Portland, OR, July 14-17, 2011 and was co-hosted by the Oregon Health & Science University and Shriners Hospital. Lynn Sakai, PhD, a member of our Professional Advisory Board, partnered with us to organize an outstanding program for the conference. More than 500 attendees gathered and took advantage of our free patient evaluation clinic, medical presentations and more than 50 smallgroup workshops and support groups including special-interest groups for older affected people, unaffected spouses, parents, fathers, mothers and more. In addition to specialized programs for children and teens, a new program was launched for young adults, ages 19–30, combining social connections and educational sessions on planning a family, transitioning to adult care, and facing issues in college and the workplace.
500 Conference Attendees
73 TEENS
58 Kids
204 Clinic Appointments with 72 Families Represented Josh Lim, FL, receives an eye evaluation at the Annual Family Conference
Annual Report July 1, 2011 – June 30, 2012 | 9
Community With more than 50 chapters, community groups and support contacts from coast-to-coast, our active volunteer network organizes support for families who are dealing with Marfan syndrome and related disorders and bands together to raise money and awareness in local communities. These groups, along with individual supporters throughout the country, carry out our mission in their local area by providing educational activities for the public, conducting outreach to doctors and hospitals, and bringing life-saving information to those who can make a difference. They also conduct fundraising activities that contribute important funds in support of our mission.
10 | Annual Report July 1, 2011 – June 30, 2012
Key Accomplishments Moonlight strolls and cookbook fundraisers, poetry readings and carnivals, memory walks and marches, casino nights and health fairs... these are just a sample of the activities that our volunteers coordinated this year, all with the goal of advancing our mission. Our groups, including our eight chapters, stepped up to conduct fundraising and awareness events. They implemented tried and true strategies and used their own creativity to devise 105 unique events that raised more than $190,000. Equally important, they raised extensive awareness about Marfan syndrome and related disorders in cities, small towns, and rural areas throughout the country. The dedication of the Marfan syndrome and related disorders community demonstrates that these volunteers are truly the heart of our Foundation.
62
Community groups nationwide
44 Telephone support contacts nationwide 105 Events nationwide
Participants in the Superhero Half Marathon in Morristown, NJ
Annual Report July 1, 2011 – June 30, 2012 | 11
Our Generous Donors The NMF extends sincerest gratitude to all those who contributed financially during our 2012 fiscal year. We list here those who contributed amounts of $1,000 or more from July 1, 2011, through June 30, 2012. Platinum Circle $1,000,000 and above Bloomberg Philanthropies
Silver Circle $250,000.00 – $999,999 Smilow Family Charitable Trust
Bronze Circle $100,000.00 – $249,999 Vital Projects Fund, Inc.
Benefactor $50,000 – $99,999 Allen and Company, Inc. Mr. & Mrs. Benjamin Carpenter Centene Corporation Shriners Hospitals for Children
Patron $25,000 – $49,999 American Heart Association, Inc. American Legion Child Welfare Foundation Frank J. Antun Foundation Burlington Coat Factory Center for Disease Control and Prevention The Chu and Chan Foundation Estate of Michael Eide Randy & Susan Falco Scott Griebel–Marfan Fundraiser Alix McLean Jennings–Team Cassie, Miles for Marfan Gary & Mary Kauffman KPMG LLP Macy’s and Bloomingdale’s Karen Murray & Harry Steinmetz William J. and Dorothy K. O’Neill Foundation Ms. Ann Reinking The Sholton Foundation
Univision Communications Inc. VF Sportswear Nick & Whiteley Wheeler John & Mary Witte
Sponsor $10,000 – $24,999 Akin, Gump, Strauss, Hauer & Feld, LLP Scott & Amy Avitabile Mr. & Mrs. Jerome Brotherton Century 21 Associates Foundation Deloitte LLP Edelman Ernst and Young LLP Mr. & Mrs. Robert Forness General Atlantic Service Co. LLC GQ Magazine Intex Solutions, Inc. Johns Hopkins Hospital Kipling The Levy Group LF USA Lord and Taylor Jean MacLeay & James Oliver Mr. James Manfredonia Merck and Co., Inc. Estate of Cora Morford Morgan Stanley Neuco, Inc. Mrs. Barbara Neustadt Oregon Health & Science University Peerless Clothing PennJersey Chapter PricewaterhouseCoopers LLP Randa Accessories Thomson Reuters Services Inc. Ross Stores Mrs. Edmond Safra Smart Apparel U.S. Glenn Stidham–13th Annual JAFGO Golf Outing
12 | Annual Report July 1, 2011 – June 30, 2012
Supporter $5,000 – $9,999 Dr. & Mrs. Douglas Aach AOL Barnes-Jewish Hospital Geoffrey Beene Foundation Belk, Inc. Dr. Charles & Mrs. Roelina Berst Mr. and Mrs. Alfred Cali Cambrison Trust The Confino Family Conger Family Foundation Michele Cripps–8th Casino Night Emerson Rachel Epperson–3 Strides for Sarah Express Scripts Mr. & Mrs. Eric Frank Mr. & Mrs. Charles Galli Mark & Emily Glasberg Greater St. Louis Chapter The Hannan Family–Kaitlyn & Jordan Golf Classic Heart of Iowa Chapter Alexandra McLean Jennings & Ezra Jennings The Koman Group Mr. Kenneth G. Langone Adam & Amy Leibner The Leir Foundation Susan & Fred Levine/ MSA Models Massachusetts Chapter Estate of Denise McDonald McLean Family Foundation Mr. & Mrs. Robert Menschel Mid-Atlantic Chapter Northern Illinois Chapter PVH Corp. R.P. Lumber and Prudential One Realty Centre The Retina Institute Jim & Sheri Rosenfeld Ron & Pam Rubin Lawrence & Robin Sapanski Dr. & Mrs. Jack Sedwick Shevell Group of Companies Glenn Stidham–14th Annual JAFGO Golf Outing Tommy Tant Surf Classic TJX Companies Mr. & Mrs. Michael Tracey Keith & Catherine Turner Peter & Tanja Vogel John Witte–Speed 4 Needs Mr. & Mrs. Robert C. Wright
Partner $1,000 – $4,999 Mr. Richard Adamski Jennifer Aguayo–Team Aguayo, Northern Illinois Chapter Walk Alberici Enterprises Glen & Jennifer Alden Alpha Phi Omega–Theta Upsilon Chapter, March for Marfan American Warehouse & Storage Apex Foundation Associated Builders Inc. AstraZeneca Pharmaceuticals Omer Badahman, MD Baker Street Trust Mr. Russell Bancroft BASF Corporation Mr. & Mrs. Michael W. Baumgartner Dr. & Mrs. Michael M. Bell Blackbaud Black Diamond Resort Co. Dr. & Mrs. Kevin Blinder Mr. Parker Block Neil & Jenna Bloomgarden Bloomingdale’s Jerry Bluestein & Regine Wood Bluestein Ms. Catherine Bolz The Bon-Ton Stores, Inc. Mr. Paul R. Boudreau William & Suzanne Bowman Mr. Maynard A. Brandt Dr. & Mrs. Alan Braverman Mr. Eric Braverman Bravo Fabrics Keith H. Bridwell, MD Adam & Shari Brooks Mr. Michael Burks Peter H. Byers, MD SSM Cardinal Glennon Children’s Medical Center Cardiothoracic Surgery Associates, P.C. Glenn & Stacy Carr Dr. & Mrs. William Casperson Karen Castellano & Jerry Newirth Mr. Anthony Castellanos & Dr. Josephine Grima Paul & Dorothy Cayo Dr. Earl Changar Charmer Sunbelt Group Mr. & Mrs. Raymond Chevallier Mr. Peter Chieco CI-AMA Mrs. Priscilla C. Ciccariello Dr. & Mrs. Jim Clanahan Mr. Clark Amos Mr. James Claxton Seth & Eileen Cohen
J. H. Cohn LLP Mr. & Mrs. Jeffrey Cokin William & Nancy Conger Heidi Connolly, MD Mrs. Kay E. Consolver Cushman & Wakefield, Inc. Mr. Michael J. Day Abelardo DeAnda, MD Bryan & Pamela Deering Denver Network Group Dinner Ms. Lucille D’Esposito Mr. & Mrs. James Devey Mr. Peter Diamond Michael & Meredith Distante The Doneger Group John & Yvette Dubinsky Jonathan & Wendy Dulman Mr. & Mrs. Cory A. Eaves John & Deborah Eck Bruce & Ellen England Mr. Bruce B. English & Ms. Laurie Hammel E.S. Originals Esquel Group Mr. & Mrs. Nick Evershed Farbstein Family Charitable Foundation Ferring Family Foundation Marianne & Albert Figen Foundation Mr. & Mrs. Robert Flynn Walter & Leona Friedrichs Gannett Foundation, Inc. Robert & Lauren Gellert Mr. Jeff Gennette Alan & Julie Gerstein Rocco & Judy Gibaldi Mr. Francesc Gines Dr. & Mrs. Leonard N. Girardi Matthew & Nancy Glennon Global Export Marketing Co. Mr. Archie Goodman Mr. & Mrs. Alan Grainger Marc & Liz Greenberg Mr. Stephan Gross Guarantee Electrical Co. Ms. Bernadine Hagnauer Albert & Rita Harris Gene & Sandra Heffern Mr. & Mrs. David E. Hickman Mr. Ken Hicks Mrs. Anne H. Hinds Max Hoffman–Northern Illinois Chapter Walk The Hoffman Family Mr. & Mrs. David M. Hollo Mr. & Mrs. David Hudspeth David & Eileen Hull Mr. Clifton Hyatt Mr. Christopher Ihde
Iona College Mindy Izzo–Run for Izzo Kaiser Permanente Foundation Mr. Jeffrey Kaplan & Ms. Debra Malbin Donna Karan International Ms. Caryn E. Kauffman Adam & Kate Kauffman Brett & Sherrill Kellam Corey & Kathleen Kerstetter Robert & Catherine Kloss Ms. Deborah Knudsen Mr. & Mrs. Paul Koren Seth & Deena Kornblau Dr. & Mrs. Nicholas Kouchoukos Mr. & Mrs. Allan Larson The Leeds Family Foundation Jonathan & Mimi Leibner Dr. & Mrs. Lawrence Lenke Jerry & Judith Lerman Jonathan & Barbara Lerman Mr. Jeffrey LeSage Jeffrey & Marsha Levine Liberty Mutual Foundation Marc & Jodi Lichtenstein Gregory & Kathleen Lind David & Donna Litvinsky Ms. Susan R. Longacre Mr. & Mrs. Peter Lori Ms. Susan Lumpkin Richard & Susan Madris Kathy Magee Quilt Fundraiser Dr. & Mrs. Hatim A. Mahmood Mr. Greg Malatestinic Arthur & Laurie Malman Doug & Virginia Marzonie Mr. & Mrs. Harry Masi Mr. Laurence Matlick Steven & Toby Mayer McAuliffe Kiwanis Club Fundraiser Ms. Karen McBride-Raffel Harold & Ellen McElhinny Patrick & Rebecca McGeehan Donald & Doris McGookey David & Sheila McLean Lee & Aidan McMahon Foundation Mr. Charles Meath Lee & Ellen Meiner Dr. & Mrs. Charles Michael Bruce & Lynne Michelich Dr. & Mrs. John Middelkamp Kathleen Mimnagh, MD Missouri Baptist Medical Center Mr. Chris Mitchell Mrs. Dorothy Moore E. A. Moos Foundation Mr. & Mrs. Terrence Moran E.G. & Kristin Morse Motoring for Marfan
Muscle Up for Marfan David & Jennifer Neal Bill & Mary Neustadt Jon & Julie Neustadt Paul & Mary Neustadt Mr. Frank Newman Northern California Chapter James & Lisa Nouss Mr. Robert O’Brien Oceana James & Karen O’Keefe OZ Management LP Paramount Tall Club of Chicago Stacie Parent–Team Jacob, Northern Illinois Chapter Walk Yogesh R. Patel, MD Dr. William Peck Ms. Ashley Pertsemlidis John and Anita Pettus Gift Foundation Michael & Jillian Pohly Glenn & Ayelet Pollner Mr. & Mrs. John Pomerantz Portland Skyliners Mr. & Mrs. William Powell Ken & Marilyn Prindle Mr. & Mrs. James R. Prutow Paul & Hailey Puleo Radiology Consultants of Mid-America Robert & Elaine Raisler Dr. & Mrs. John Reckner Revman International, Inc. Ms. Judith J. Ricca Dr. Paul Robiolio & Ms. Aixa Martinez Hon. & Mrs. Alan Rockoff Mary J. Roman, MD Peter & Elizabeth Roos Theo T. & Hilda Rose Foundation, Inc. Frederick & Georgette Rothe Daniel & Lynda Ryan Mr. Peter T. Sachse Ms. Christine Sarkisian Paul & Alison Savage Mr. Kenneth Schowengerdt Barry & Barbara Schwartz Mr. Kenneth Seel Scott & Rose Serels Andrew & Lesley Serenyi Mrs. Erika E. Shaw Ms. Kathleen M. Shay Conor Sheehan Fundraiser Paul & Kristin Sholton Adam & Birgitte Sholton Ira & Wendi Silverman Mr. & Mrs. Howard Socol Barry & Linda Sommers
Ron & Lesley Sommers Mr. Al Sonander & Ms. Karene Infranco Dr. & Mrs. William Southworth Southeast Florida Network Group John & Catherine Spillman St. Jude Medical, Inc. St. Louis Children’s Hospital St. Louis Tip Toppers Tracy Stein & Marco Masotti Ms. Sheila M. Stone Stone Hedge Day Spa, LTD Stone Oak Pharmacy David V. Strider, RN, NP Dr. & Mrs. David Striker George & Nancy Sumberaz Swank, Inc. Mr. Franklin L. Terkelsen Terumo Cardiovascular Systems Ms. Bernel Thomas Jeffrey & Tanya Tochner Mr. David Trinin Douglas & Robyn Troob Peter & Marjorie Troob Mr. Jon Tullis Ms. Marilyn Usibelli Derik & Beth Utz Mr. & Mrs. Charles Vago Valero Energy Foundation Mr. & Mrs. Michael Van Eekeren Robert & Jennifer Vecchio VF Foundation Mrs. Maria Vicari Mark & Karen Visser Mr. & Mrs. Donald Vollmar Mr. & Mrs. John Wallace, Jr. Ty & Doryn Wallach Walmart Stores, Inc. Washington University School of Medicine, Department of Vascular Surgery Washington University School of Medicine, Division of Cardiothoracic Surgery Adam & Dawn Weinstein Mr. & Mrs. William Weinstein Benjamin & Lindsey Weisman Jeffrey & Heide Wells Emily Wheeler–15 Romolo Fundraiser Mr. Robert C. White Tom White & Nancy Tove Eric Wika Memorial Car Show Evan & Amy Wildstein David & Cheryl Williams Eric & Susan Wiseman Mark & Caroline Yeager Mr. Mikhail Zgurskiy Mr. & Mrs. J. Joseph Zimmerman
Annual Report July 1, 2011 – June 30, 2012 | 13
Financial Commentary In 2012, the National Marfan Foundation continued its concerted effort to expand our major gifts initiative and other fundraising strategies for the purpose of providing the resources required for a continued expansion of our programs. Significant gains in major gifts, grassroots fundraising and support of our annual conference resulted in the extraordinary increase in the Total Revenue and Gains of $4.173 million over the prior year. Contributions increased from $1,692K to $6,016K, reflecting a successful investment by the Foundation in its donor cultivation program which focused our attention across the spectrum of our donors. The major gift cultivation program resulted in the securing of a $5 million gift from Bloomberg Philanthropies, which will be used to expand our robust research program over the next few years. The research expansion will include an additional Two-Year Faculty Grant and the introduction of a new Early Investigator Grant proposal, which will be used to attract scientists in the early stages of career development. Success was also achieved at the other end of the donor spectrum, as evidenced by an increase of 78% in grassroots fundraising, thus broadening our base of committed donors. These financial successes and the resulting increase in revenues and gains enabled the Foundation to increase its funding of program services from $2,769K to $3,158K, which included an expansion in 2012 of the Research grant program with an additional $250K in grants disbursed through the Faculty Grant and Fellowship Grant programs. In addition, an investment was made to enhance the Foundation’s Volunteer Network by developing new strategies to empower and better equip our community leaders as they meet the needs of our constituents in their local communities.
14 | Annual Report July 1, 2011 – June 30, 2012
As has been the practice over the past several years, in 2012 the National Marfan Foundation’s ongoing commitment to funding several multi-year research studies, including the clinical trial ancillary studies, fellowship grant program, and aortic surgery studies, continued to be financed by previously raised funds dedicated for these purposes, resulting once again in a planned deficit for this program. In summary, the Foundation continued to expand its programs and in particular, the Research Program, and successfully secured funding to fulfill its vision to take this program to an even higher level in the years to come. REVENUES FY 2012 Memorials 1% Gifts In-kind 1%
Net Event Income 13%
Membership 2% Conference 3% FMV Change, Charitable Remainder Trust 1%
Contributions 79%
EXPENSES FY 2012
Public Information 15%
Research & Grants 42%
Management & General 9% Fundraising 14%
Patient Services 20%
Statement of Activities Year Ended June 30, 2012 and June 30, 2011
Unrestricted Revenues and Gains: Contributions Memorials Membership contributions National Marfan Conference Program revenue Net investment income Events, net of direct expenses of $318,661 and $338,020 Change in value of beneficial interest charitable remainder trust Gifts in-kind Net assets released from restriction Total Revenues and Gains
$
1,098,489 $ 81,047 134,073 210,386 7,831 143,444
Temporarily Restricted
Year Ended June 30, 2012
4,918,459 $ 17,258 -
Year Ended June 30, 2011
6,016,948 $ 84,707 134,073 227,644 7,831 143,444
1,692,489 84,707 123,744 163,605 6,590 127,521
994,652
-
994,652
1,076,305
90,000 1,206,416 3,966,338
(28,501) (1,206,416) 3,700,800
(28,501) 90,000 7,667,138
99,935 118,991 3,493,887
1,719,595 629,230 809,084 3,157,909
-
1,719,595 629,230 809,084 3,157,909
1,536,107 510,693 721,748 2,768,548
377,093 552,337 929,430
-
377,093 552,337 929,430
304,227 627,812 932,039
Total Expenses
4,087,339
-
4,087,339
3,700,587
Increase (Decrease) in Net Assets
3,700,800
3,700,800
3,579,799
(206,700)
Net Assets, beginning of the year
5,514,896
5,514,896
9,403,877
9,610,577
3,767,980 $
9,215,696 $
12,983,676
9,403,877
Expenses: Program services expenses: Research initiatives and grants Education and public awareness Patient services and annual conference Total Program Services Expenses Supporting services expenses: Management and general Fundraising Total Supporting Services Expenses
Net Assets, end of the year
$
Annual Report July 1, 2011 – June 30, 2012 | 15
Statements of Financial Position June 30, 2012 and June 30, 2011 June 30, 2012
June 30, 2011
Assets Cash
$
1,359,843 $
904,821
Investments
6,051,571
5,856,998
Pledges receivable, net
4,057,769
1,115,119
Prepaid Expenses and Other Current Assets
146,333
206,288
Property and Equipment, net
787,273
758,506
Beneficial Interest Charitable Remainder Trust
905,978
934,479
98,784
80,071
13,407,551
9,856,282
224,013
230,785
-
25,000
101,078
116,549
98,784
80,071
423,875
452,405
General
1,479,219
1,730,996
Board designated
2,288,761
2,157,985
Temporarily restricted
9,215,696
5,514,896
Total Net Assets
12,983,676
9,403,877
13,407,551 $
9,856,282
Other Assets Total Assets Liabilities and Net Assets Liabilities: Accrued liabilities Grant payable Deferred conference income Other payables Total current liabilities Net Assets: Unrestricted:
Total Liabilities and Net Assets
$
The Foundation’s complete audited financial statements for the years ended June 30, 2012 and 2011 may be viewed online at www.marfan.org or obtained by writing to the National Marfan Foundation, 22 Manhasset Avenue, Port Washington, NY 11050.
16 | Annual Report July 1, 2011 – June 30, 2012
Board of Directors 2011–2012
Professional Advisory Board 2011–2012
Scientific Advisory Board 2011–2012
Jon Tullis Chair
Alan C. Braverman, MD Chair
Bjorn Olsen, MD, PhD Chair
Washington University School of Medicine
Harvard Medical School
Peter H. Byers, MD
Craig T. Basson, MD, PhD
Gavin Lindberg Vice Chair Raymond Chevallier Treasurer
Novartis Institutes for Biomedical Research
Duke Cameron, MD
John C. Carey, MD
Johns Hopkins Hospital
University of Utah Health Sciences Center
Mary J. Roman, MD Secretary
Heidi Connolly, MD
Bruce D. Gelb, M.D.
Mayo Clinic
Mount Sinai School of Medicine
Cory Eaves Executive Committee
Joseph S. Coselli, MD
Christine Seidman, MD
Gary Kauffman Executive Committee Karen Murray Executive Committee Scott Avitabile Maya Brown-Zimmerman Teri Dean Jerry Lerman Kathleen Mimnagh, MD Nancy Sumberaz
Graphic Design: Alexandra Dubow; Photography: Timothy D. Joyce Photography
University of Washington School of Medicine
Baylor College of Medicine and St. Luke’s Episcopal Hospital
Harvard Medical School
Jessica G. Davis, MD
Washington University School of Medicine
New York Presbyterian Hospital-Weill Cornell Medical Center
Richard J. Wenstrup, MD
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
Benjamin Weisman
Irene Maumenee, MD
Carolyn Levering President & CEO
University of Illinois Eye and Ear Infirmary
Priscilla Ciccariello Chair Emeritus Michael L. Weamer, CAE Board Advisor
Dianna Milewicz, MD, PhD University of Texas Houston Health Science Center
D. Craig Miller, MD Stanford University Medical Center
Reed E. Pyeritz, MD, PhD University of Pennsylvania School of Medicine
Francesco Ramirez, PhD Mount Sinai School of Medicine
David L. Rimoin, MD, PhD (1936–2012) Cedars-Sinai Medical Center
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 (1921–2008)
Robert W. Thompson, MD
Myriad Genetic Laboratories, Inc.
Victor A. McKusick, MD (1921–2008)
Young Adult Group at Annual Family Conference
National Marfan Foundation 22 Manhasset Avenue Port Washington, NY 11050 800-8-MARFAN 516-883-8712 www.marfan.org