-- NMF HeARTworks planned for April 18

National Marfan Foundation Benefit on April 18 Honors
Parents who are Changing the World for Children with Marfan
NBC’S Brian Williams to Host Event at Cipriani 42nd Street --

PORT WASHINGTON, NY (March 15, 2006) — On April 18, the National Marfan Foundation will hold its annual benefit, HeARTworks: The Marfan Gala, to honor parents who are changing the world for children with Marfan syndrome, a potentially life-threatening genetic disorder of the body’s connective tissue. NBC-TV’s Brian Williams will serve as master of ceremonies at the gala, which will be held at Cipriani 42nd Street in New York City, from 6:00 p.m-9:30 p.m.

Mayor Michael Bloomberg is the honorary chair, Ann Reinking is artistic chair, and Karen Murray, group president of Liz Claiborne, Inc., is corporate host of HeARTworks, which raised more than $1 million for the NMF last year. The evening will feature entertainment by an exciting line up of performers (to be announced on April 8) who have graced both the Broadway stage and the Silver Screen.

Three Hero with a Heart Awards will be presented to parents who are changing the world for children with Marfan syndrome. The honorees are:

• Paul Sponseller, MD, Chief of Pediatric Orthopedics and Vice Chairman of Orthopedic Surgery at Johns Hopkins Hospital and Professor of Orthopedic Surgery at Johns Hopkins University. Dr. Sponseller, a parent himself, has been instrumental in the care of children with the Marfan syndrome for more than 25 years as he treats the array of orthopedic problems that affect children with the disorder and can impact their quality of life, even at an early age.
  
  
• Susan Falco, of Pound Ridge, NY, member of the NMF’s Board of Directors who has a 19-year-old daughter with Marfan syndrome. Susan has worked tirelessly to raise funds for the NMF and has helped open the doors at NBC, where her husband, Randy (a HeARTworks dinner chair), is President and COO. As a result, Susan has facilitated national publicity for the NMF including a November 2005 segment on The Today Show.
  
  
• Heather Holmes Floyd, of Waban, MA, who has a 10-year-old son with Marfan syndrome. Heather has been involved in fundraising and raising awareness for the NMF and Marfan syndrome for years. She has also made her mark by helping to create a presence for the Foundation in New England. She is one of the driving forces in the NMF’s Massachusetts Chapter and helped spearhead the creation of the Marfan Syndrome Clinic at Children’s Hospital Boston, the first Marfan clinic in Boston.

"In the 25 years since the inception of the NMF, there have been significant changes in the population we serve. Ten or fifteen years ago, the people who sought information and support from the NMF were in their 20s, 30s or 40s, often after they had experienced an aortic dissection, the most life-threatening complication of Marfan syndrome. Now, due to greater awareness of Marfan syndrome, better diagnosis and enhanced medical treatment, we are serving more families and young children who can realistically expect to live a full, productive life with this disorder. While we must still support them as they cope with the chronic, progressive nature of Marfan syndrome, we can help them avoid a fatal dissection and provide hope for a possible cure, said Carolyn Levering, President and Chief Executive Officer of the NMF. “As we recognize this population shift, we are thrilled to honor three parents who have made their mark on the care of children. Dr. Sponseller, Susan Falco and Heather Holmes Floyd have made such important contributions to the care of the Marfan community and we proudly salute them for their efforts."

HeARTworks: The Marfan Gala features a silent auction of prizes and a selection of one-of-a-kind hearts designed by talented artists from the region. A live auction of exciting travel prizes, hard-to-get tickets and more will be conducted by Ben Doller, of Sotheby’s, and WNBC-TV’s Jane Hanson, who is a member of the Gala Committee.

Now in its sixth year, Heartworks has raised more than $2.5 million for the NMF. The proceeds from the event are earmarked for Marfan syndrome research, support for individuals and families affected by the disorder, and public awareness and education.

For more information and to purchase tickets for HeARTworks: The Marfan Gala, contact the National Marfan Foundation, 800-8-MARFAN, extension 10. Individual tickets are $500 per person, and $300 of each ticket is a tax-deductible donation to the NMF. For information about sponsoring this event or making a donation for the silent gift auction, please contact Marlo Goodstein at 800-8-MARFAN, ext. 38.