It was exactly 20 years ago that I embarked on the most rewarding journey in my professional life, when Priscilla Ciccariello, Chair Emeritus, asked me to serve as President & CEO of The Marfan Foundation.
The 14th Annual Tommy Tant Memorial Surf Classic presented by Nautica returns to Flagler Beach, FL, on November 9-10, 2013, and will again benefit The Marfan Foundation.
One in five people with Marfan syndrome had some form of surgery before they were diagnosed with the potentially life-threatening condition, according to a survey of 1277 people conducted by The Marfan Foundation from July 21-August 18, 2013.
Two-time Tony nominee Daphne Rubin-Vega is speaking out for the The Marfan Foundation, urging the Hispanic community to learn about Marfan syndrome, a life-threatening genetic disorder that affects one in 5,000 men and women of every race and ethnicity. Tragically, experts estimate that nearly half of the people who have Marfan syndrome don't know it. Without proper diagnosis and treatment, they are at high risk for aortic dissection and sudden death.