I am thankful for the opportunity to better educate myself, meet others dealing with the disorder, and also discuss ways how to better educate the world on how to deal with Marfan syndrome.
Baltimore, MD (PRWEB) July 12, 2014
The Marfan Foundation announced today that Co-Founder and CEO of Cash Money Records Ronald Williams and former Baylor University basketball standout and “NBA Draft Pick” Isaiah Austin are new spokespeople for the nonprofit, which works to create a brighter future for people with Marfan syndrome and related disorders.
Both Williams and Austin are affected by Marfan syndrome, a potentially life-threatening disorder of the body’s connective tissue. Williams was diagnosed with Marfan syndrome seven years ago, while in his early 40’s. Despite exhibiting many of the outward signs of the condition since childhood, it was not until he required life-saving aortic surgery that he received his diagnosis.
"I'm both humbled and honored to become a spokesperson for The Marfan Foundation. I've endured the effects of this genetic disease for a long time, and I personally wish I had been diagnosed earlier,” said Williams. “I believe it's our responsibility to increase awareness as much as we possibly can. If we can help the younger generation recognize the signs early and get tested, we can make a big difference in living."
Austin, 20, a basketball standout at Baylor University, was diagnosed just last month prior to the NBA draft. The projected first round selection also exhibits many of the outward signs of Marfan syndrome, but required a genetic test to confirm the diagnosis. Because of the dangers of Marfan syndrome, Austin was unable to enter the NBA draft.
"I am overwhelmed with excitement this week and I am looking forward to being introduced to the Marfan community,” said Austin. “I am thankful for the opportunity to better educate myself, meet others dealing with the disorder, and also discuss ways how to better educate the world on how to deal with Marfan syndrome."
“Both Ronald and Isaiah were fortunate to be diagnosed with Marfan syndrome before a potentially fatal tear in their aorta, the large blood vessel that takes blood away from the heart,” said Carolyn Levering, President & CEO, The Marfan Foundation. “They have both expressed their commitment to help us raise awareness so that people can get diagnosed and access the care they need to live a normal lifespan with Marfan syndrome and related disorders.”
About 200,000 people in the U.S. have Marfan syndrome or a related disorders, and medical experts estimate that half are not diagnosed. Without a diagnosis and treatment, they are at risk of a sudden early death from a tear or rupture of their aorta.
Ronald has already started to make an impact on early diagnosis of Marfan syndrome with the health screenings that he began instituting in 2013 at the Annual Cash Money Turkey Giveaway in his hometown of New Orleans. He hopes to harness the reach of Cash Money Records and its various artists, including Nicki Minaj, Lil Wayne, and Drake, to make sure that more people know the signs of Marfan syndrome and how to get diagnosed and treated.
Isaiah, whose hopes for an NBA career were dashed when he received his diagnosis in June 2014, has already begun to dream again. Immediately following his diagnosis, he began talking about Marfan syndrome and how fortunate he was to get diagnosed. He is committed to working with the Foundation, especially to increase awareness among young athletes and improve and access to care.
The Foundation plans to roll out programs featuring Ron and Isaiah in the coming year and develop multi-year initiatives so that more people can get diagnosed and lives can be saved.
Marfan Syndrome and The Marfan Foundation
Marfan syndrome is a life-threatening genetic disorder of the body's connective tissue. It affects the heart and blood vessels, the bones and the eyes. Knowing the signs is the key to early and accurate diagnosis and life-saving treatment.
The Marfan Foundation creates a brighter future for everyone affected by Marfan syndrome and related disorders. The Foundation works tirelessly to advance research, serve as a resource for families and healthcare providers, and raise public awareness.
Learn more and get involved at Marfan.org.