:: National Marfan Foundation ::

1981

First meeting of health professionals, people with Marfan syndrome and family members, organized by Reed Pyeritz, MD, PhD, in Baltimore, that evolved into the National Marfan Foundation.

NMF establishes its Professional Advisory Board. Reed Pyeritz, MD, PhD, Johns Hopkins Hospital, is named Chair.

1982

NMF holds its first national meeting at the Enoch Pratt Library in Baltimore with approximately 50 people in attendance.

1983

NMF’s chapter activities begin, with groups in Los Angeles and New York.

Priscilla Ciccariello becomes president of the New York Chapter, the first of many leadership roles she will hold through the years.

1984

NMF honors Victor McKusick, MD, Johns Hopkins Hospital, with the first Antoine Marfan Award.

NMF publishes the first issue of its newsletter, Connective Issues, which was renamed as a tribute to Dr. McKusick and his textbook, Heritable Disorders of Connective Tissue. Close to 1500 people received the first issue of this newsletter.

Marfan syndrome receives its first major media coverage, with an article in Newsweek Magazine.

NMF publishes the first edition of its comprehensive resource booklet on Marfan syndrome. The booklet was written by Reed Pyeritz, MD, PhD, and Julia Conant, MD; it was designed by Peter Ciccariello.

1985

NMF’s first Family Fund is established with a $10,000 donation by the Heller family.

1986

NMF honors Reed E. Pyeritz, MD, PhD, Johns Hopkins Hospital, with the Antoine Marfan Award.

Publicity on Marfan syndrome and the death of U.S. Olympic volleyball captain Flo Hyman in Sports Illustrated and on Good Morning America results in 3,000 letters being mailed to the NMF from people who want to know more about the disorder.

1987

NMF national headquarters opens in the Mertz Building in Port Washington, NY, with two paid staffers and one phone line. The Foundation was able to purchase one computer from IBM with a $3,000 Mertz Grant.

NMF honors Richard B. Devereux, MD, New York Hospital-Cornell Medical Center, with the Antoine Marfan Award.

1988

First International Symposium on Marfan Syndrome, organized by Reed Pyeritz, MD, PhD, is held in Baltimore, MD.

NMF honors E. Stanley Crawford, MD, Methodist Hospital, Houston, and Vincent L. Gott, MD, Johns Hopkins Hospital, with the Antoine Marfan Award.

1989

NMF is a founding member of the Coalition of Heritable Disorders of Connective Tissue (CHDCT).

NMF honors Irene Maumenee, MD, Johns Hopkins Hospital, with the Antoine Marfan Award.

1990

NMF honors Senator Lowell P. Weicker, State of Connecticut, with the Antoine Marfan Award.

1991

NMF establishes its Scientific Advisory Board. Victor McKusick, MD, is appointed chair.

NMF launches its Information Resource Center (IRC), a toll-free information line, 800-8-MARFAN.

NMF designated February as Have a Heart for Marfan Month and launches its Have a Heart Campaign for the first time.

NMF honors Peter Byers, MD, University of Washington School of Medicine, and David W. Hollister, MD, Shriners Hospital, Portland, with the Antoine Marfan Award.

NMF sponsors international workshop on Marfan syndrome at Banbury Conference Center in Cold Spring Harbor, NY, bringing together leading basic and clinical investigators and facilitating collaborative studies.

Second International Symposium on Marfan Syndrome, organized by Reed Pyeritz, MD, PhD, and Uta Francke, MD, is held in San Francisco, CA. The NMF supports and helps organize the meeting.

The International Federation of Marfan Syndrome Organizations (IFMSO) is founded at the Second International Symposium on Marfan Syndrome. This international meeting of patient groups was convened by the NMF; Priscilla Ciccariello is named the first president of IFMSO.

NMF honors Lena Peltonen, MD, PhD, Helsinki, Finland, with the Antoine Marfan Award.

NMF honors Francisco Ramirez, PhD, Mount Sinai School of Medicine, Lynn Sakai, PhD, Shriners Hospital, Portland, and Elizabeth Lieber Fox, with the Antoine Marfan Award.

NMF names Richard B. Devereux, New York Hospital-Cornell Medical Center, Chair of the Professional Advisory Board.

NMF helps convene and supports the Third International Symposium on Marfan Syndrome, organized by Roland Hetzer, MD, German Heart Institute, and Leena Peltonen, MD, PhD, University of Finland, Helsinki, held in Berlin, Germany, in September.

NMF honors Hal Dietz, MD, and Clair Francomano, MD, Johns Hopkins Hospital, with the Antoine Marfan Award.

NMF, in conjunction with the Coalition for Heritable Disorders of Connective Tissue, provides spoken testimony for the first time before the House Appropriations Committee to express the importance and need for research on connective tissue disorders. The testimony is presented by NMF member Scott Kiefer.

NMF obtains Appropriations Bill Report Language for the first time in the Senate Appropriations Bills for Labor, Health and Human Services.

NMF helps convene a Workshop on Heritable Disorders of Connective Tissue, funded by NIAMS, National Institute of Child Health and Human Development and the Office of Rare Disease Research and co-sponsored Coalition for Heritable Disorders of Connective Tissue (CHCDT) and held at the NIH. Marfan syndrome was among the topic areas in this workshop about current knowledge and research directions in heritable disorders of connective tissue.

NMF Board of Directors expands the Foundation’s mission to include serving people with Marfan syndrome and related disorders.

NMF obtains Appropriations Bill Report Language for the first time in the House Appropriations Bills for Labor, Health and Human Services.

NMF marks the 100 years since Marfan syndrome was identified by French pediatrician Antoine Marfan with awareness and fundraising activities and recognition at the Annual Conference in Houston.

NMF helps convene and support the Fourth International Symposium on Marfan Syndrome and the First International Consumer Workshop on Marfan Syndrome, held in Davos, Switzerland. It is coordinated by Marfan Stiftung (Schweiz) in cooperation with IFMSO and co-chaired by Beat Steinmann, MD, and M. Raghunath, MD.

NMF honors Uta Francke, MD, and Cheryl Gasner, MN, C/FNP, Stanford University School of Medicine, with the Antoine Marfan Award.

NMF is the only voluntary health organization to participate in the National Athletic Trainers Association's Summit on Sudden Death and the Athlete, which focused on improving pre-participation screenings for athletes.

NMF’s video, How Do Your Genes Fit?, which was funded by a grant from the American Legion Child Welfare Foundation, was awarded a Certificate for Excellence in film on adolescents’ health at the American Medical Association’s 1996 international Health and Medical Film Competition.

NMF is cited as the “lead advocate for people with aortic disease” in the New York State Department of Health’s investigative report on the death of RENT playwright Jonathan Larson.

NMF honors Joseph S. Coselli, MD, Baylor College of Medicine/The Methodist Hospital, with the Antoine Marfan Award.

NMF helps convene and supports the Fifth International Symposium on Marfan Syndrome in Hanasaari, Helsinki, Finland.

The NMF convenes and supports the Banbury Conference on critical issues in Marfan syndrome research at the Cold Spring Harbor Laboratory in Cold Spring Harbor, NY.

NMF completes pilot phase of the Emergency Medicine Campaign to increase awareness of aortic dissection and proper diagnosis and treatment.

NMF holds the Marfan Artist Project in New York. Created by Julie Kurnitz, Lisa Dahlberg and Angela Hebert, the event raises $65,000 for the NMF. Karen Murray, Group President of Menswear Brands for Liz Claiborne, Inc. is corporate host.

NMF honors Paul D. Sponseller, MD, Johns Hopkins School of Medicine, with the Antoine Marfan Award.

NMF, in conjunction with the Coalition of Heritable Disorders of Connective Tissue, provides spoken testimony before the Senate Appropriates committee for the first time to express the importance and need for research on connective tissue disorders. NMF Board member Karen Murray provides the testimony.

NMF PAB Chair Hal Dietz, MD, and NMF Vice President Karen Murray are featured on NBC-TV’s Today Show. Thousands of viewers contact the NMF via phone and website.

NMF honors Priscilla Ciccariello at Clinical Trials and Tributes benefit in Washington, DC. The event features a performance of Clinical Trials, a one-woman performance by NMF Board member Julie Kurnitz. Francis Collins, MD, PhD, Director of the Human Genome Research Institute, and Victor McKusick, MD, serve as honorary co-chairs.

Segment on Marfan syndrome is broadcast on NBC-TV’s Dateline, generating 25,000 hits to the NMF website.

NMF honors Dianna Milewicz, MD, PhD, University of Texas Health Science Center at Houston, with the Antoine Marfan Award,

NMF names Hal Dietz, MD, Johns Hopkins Hospital, Chair of the Professional Advisory Board.

NMF annual conference offers a children and teen program for the first time. Fourteen children and twenty teens participate.

NMF helps convene the 3rd Workshop on Heritable Disorders of Connective Tissue at the National Institutes of Health, Bethesda, MD.

Heartworks: The Marfan Gala is held at Liz Claiborne, raising nearly $200,000. Wayne Isom, MD, Weill Cornell Medical Center, is awarded the NMF’s Hero with a Heart Award.

NMF launches the Research Millennium Initiative, an aggressive effort to engage and fund a growing number of world-class investigators to seek answers to the most crucial questions facing people affected by Marfan syndrome and related disorders.

As a result of the Research Millennium Initiative, the NMF increases traditional research grants to $50,000 each with an opportunity for a two-year award for $100,000. Target grants are established to provide funding in areas that require further investigation. NMF fellowships are added to ensure continued interest in the field of Marfan syndrome and related disorders among fellows who are just beginning their research career.

NMF Information Resource Center expands with the addition of the Foundation’s first Director of Support Services, who is charged with developing new systems and new materials to respond to the high volume of inquiries received every day.

NMF honors Maurice Godfrey, PhD, University of Nebraska Medical Center, with the Antoine Marfan Award.

NMF establishes the Priscilla Ciccariello Award, which honors a lay person who has worked tirelessly to improve the quality of life of people with Marfan syndrome. The first recipient is NMF Executive Director Carolyn Levering.

NMF helps convene and sponsors the Sixth International Symposium on Marfan Syndrome in Seattle.

NMF launches the cornerstone of its Emergency Medicine Campaign, the CME-accredited video, Emergency Diagnosis and Treatment of Aortic Dissection.

NMF works with producers for NBC-TV’s ER for inclusion of Marfan syndrome in the story line of this popular primetime hospital drama. The Foundation leverages the broadcast to generate news segments on Marfan syndrome on NBC stations around the country, as well as in newspapers – including the New York Times and medical publications.

NMF honors D. Craig Miller, MD, Stanford University School of Medicine, with the Antoine Marfan Award.

NMF expands program staff by adding first Director of Research and first Director of Education.

NMF launches Building for the Future, a capital campaign to raise $6 million for the acquisition and renovation of the NMF’s Education and Research Center building and technology upgrades needed to maintain and expand the Foundation’s comprehensive research, education and support services.

NMF honors Johns Hopkins Hospital and its many Marfan specialists with the Antoine Marfan Award.

NMF honors Valentin Fuster, MD, with the 2002 Hero with a Heart Award at the Heartworks gala.

NMF partners with the American Heart Association for a continuing medical education program on Marfan syndrome and related disorders, beginning an important and valued partnership.

NMF provides funding support for key research that is published in Nature titled "Genetics:Dysregulation of TGF-B contributes to the pathogenesis of Marfan syndrome."

NMF awards Hero with a Heart Award to Richard Devereux, MD, and Mary Roman, MD, Weill Cornell Medical Center.

NMF honors Alan C. Braverman, MD, University of Washington School of Medicine, with the Antoine Marfan Award.

NMF honors Mary Roman, MD, and Richard Devereux, MD, with the Hero with a Heart Award at the Heartworks gala, which raised $375,000 for the Foundation.

NMF works with Wall Street Journal Chicago Bureau Chief Kevin Helliker on a year-long series on aortic dissection. Two of the articles focus on Marfan syndrome. Helliker later wins a Pulitzer Prize for the series.

The NMF receives Charity Navigator’s four-star rating for the first time. This indicates that the Foundation exceeds industry standards and outperforms most charities in its cause. The NMF goes on to receive this rating every year since.

NMF awards its first target grant for the multi-center study, Aortic Valve Operative Outcomes in Marfan Patients. Dr. Joseph Coselli of Baylor College of Medicine in Houston, TX, the principal Investigator and director of both the Data Coordinating Center and the Surgical Core, is providing the scientific and organizational leadership for the study, with cores led by Heidi M. Connolly, Mayo Clinic at Rochester (Imaging Core), Dr. Hal Dietz, Johns Hopkins University School of Medicine (Marfan Diagnostic Core), and Dr. Dianna M. Milewicz, University of Texas School of Medicine at Houston (Genetic Repository). Seventeen surgical centers in the U.S. and eight surgical centers from other parts of the world contribute to data collection for the study.

NMF honors Tirone David, MD, University of Toronto, with the Antoine Marfan Award.

NMF honors Len Girardi, MD; Paul Charron, president of Liz Claiborne; and Allan and Nanette Larson, parents of Jonathan Larson, with the Hero with a Heart Award at the Heartworks gala, which raises $500,000 for the Foundation.

NMF names Dianna Milewicz, MD, PhD, University of Texas Health Science Center at Houston, Chair of the Professional Advisory Board.

NMF’s capital campaign, Building for the Future, surpasses its goal by raising more than $6 million.

Victor A. McKusick Fellowship Grant established to cultivate promising young physician scientists or research scientists in the field of Marfan syndrome and related disorders.

NMF helps convene and supports the Seventh International Symposium on Marfan Syndrome, held in Ghent, Belgium.

NMF’s years of work with the National Institutes of Health leads to the announcement by the National Heart, Lung and Blood Institute that its Pediatric Heart Network would undertake a clinical trial to evaluate new drug therapies that may slow the process of aortic root enlargement in children and young adults with Marfan syndrome.

NMF co-hosts the 21st Annual Conference with Barnes-Jewish Hospital and Washington University School of Medicine in St. Louis. Nearly 700 people attend, making it the largest NMF conference ever.

Heartworks: The Marfan Gala, held at Gotham Hall in New York City, attracts more than 500 people and raises more than $1 million for the NMF. Karen Murray and Victor McKusick, MD, are the recipients of the Hero with a Heart Award.

NMF launches Heart of the Matter Fact Sheet Series, a consumer-friendly series of fact sheets about different aspects of Marfan syndrome and related disorders.

NMF conducts comprehensive marketing and public relations campaign in conjunction with the debut of the movie RENT. Highlights include coverage of Marfan syndrome on The Today Show, in-theater promotions, a public service announcement featuring RENT’s Anthony Rapp and local market fundraising and awareness events in six major cities.

NMF honors Jessica G. Davis, MD, New York Presbyterian Hospital – Weill Cornell Medical Center, with the Antoine Marfan Award.

NMF honors Joe Neustadt (posthumously) and the Neustadt family with the Priscilla Ciccariello Award.

NMF supports key research, led by PAB member Hal Dietz, MD, on losartan, a medication already approved by the FDA. The study, Losartan, an AT-1 Antagonist, Prevents Aortic Aneurysm in a Mouse Model of Marfan Syndrome is published in Science.

NMF leverages the losartan findings to initiate talks with the National Heart, Lung and Blood Institute and look for mechanisms for support of a clinical trial on losartan and the current gold-standard for treatment of aortic enlargement, a beta blocker. As a result, the NHLBI-funded Pediatric Heart Network announces clinical trial for losartan in patients with Marfan syndrome.

NMF partners with the Pediatric Heart Network to provide funding for ancillary studies to the Atenolol vs. Losartan clinical trial, promote enrollment and provide scholarships for patients who need financial assistance in order to enroll.

NMF celebrates its 25th Anniversary at the annual conference in Philadelphia, highlighted by a dinner at the Constitution Center with 425 people in attendance.

NMF honors Francis S. Collins, MD, PhD, National Human Genome Research Institute, with the Antoine Marfan Award.

NMF honors Susan Falco, Heather Holmes Floyd and Paul Sponseller, MD, with the Hero with a Heart Award at the Heartworks gala, which again raises $1 million for the Foundation.

NMF honors Anne DePaepe, MD, PhD, Ghent University Hospital, with the Antoine Marfan Award.

NMF honors Antonio Gotto, MD, Ann Reinking and Ben Carpenter with the Hero with a Heart Award at the Heartworks gala, which again raises $1 million for the Foundation.

Clinical trial on losartan vs. atenolol (beta blocker) begins, with NMF support.

NMF meets with the Centers for Disease Control and Prevention (CDC) for the first time to discuss collaborative opportunities.

NMF advocates for Genetic Information Discrimination Act (GINA), which becomes law after near unanimous support in the House and Senate.

NMF honors Bart Loeys, MD, Ghent University Hospital, with the Antoine Marfan Award.

NMF honors Hal Dietz, MD, and Merck & Co., with the Hero with a Heart Award at the Heartworks gala, which raises $1 million for the fourth consecutive year.

NMF mourns the death of Victor McKusick, MD, considered the “Father of Genetic Medicine.”

NMF names Bjorn Olsen, MD, PhD, Harvard Medical School, chair of the Scientific Advisory Board.

NMF annual conference has largest program for children and teens to date, with 58 children and 89 teens participating.

NMF re-launches website, including NMFconnect, the Foundation’s own social networking community.