When you or a loved one receives a diagnosis of Marfan syndrome or a related disorder, you enter a whole new world. Everyone deals with the diagnosis differently.
“Where there is unity there is always victory.” –Publilius Syrus
Our nationwide Walk for Victory program is achieving just that…victory.
Roughly 200,000 people in the United States are living with Marfan syndrome or a related connective tissue disorder. Since 1981, The Marfan Foundation has observed, and been a part of countless victories in the Marfan syndrome and related disorders community.
It’s hard to believe that it’s been less than eight months since Isaiah Austin, the former Baylor University basketball standout was diagnosed with Marfan syndrome and had to withdraw from the NBA draft. Soon after the diagnosis, Isaiah attended our annual family conference and met so many people from our Marfan syndrome and related disorders community. Since then, he has continued to raise awareness about Marfan syndrome through activities from coast-to-coast. All while he works to complete his undergraduate degree at Baylor. We recently had an opportunity to ask him some questions about his Marfan journey so far.
One of the most satisfying aspects of being part of this community is meeting the people who work hard to create a brighter future for all those living with Marfan syndrome and related disorders. Earlier this month, we had a chance to catch up with one of our senior investigators, Silvia Smaldone, PhD, from the Icahn School of Medicine at Mount Sinai, to learn more about her research. Watch the video and you'll see how her commitment and passion really shine. She says it best: "Do the right thing and you can really solve mysteries."