Back in 2010, I wrote My Beef With the Michael Phelps Marfan Obsession, a piece that remains one of the most read on my blog. I objected (and still do) to the idea of Phelps (who does NOT have Marfan) as being a role model for our community. I hoped that some day, our community would have a spokesperson who our kids could really look up to.

It took four years, but here we are! Not just one, but two spokesmen! We have Ron Williams, CEO of Cash Money records, and Isaiah Austin, former Baylor basketball star.

I had the opportunity to meet them both at this year’s conference. Mr. Williams spent some time with the teenagers, which was fantastic. Isaiah Austin posed for hundreds of photographs. Mr. Williams is someone who is acknowledging that he has Marfan, and showing our youth that it doesn’t have to impede their success. Isaiah was willing to be public about his diagnosis, too. He’s stepped away from basketball, and finding a new dream. He’s showing kids that even though Marfan can cause loss, it isn’t the end. I’m grateful for the time both men took to be around our youth.

They are what I have hoped for. As I had a poster of the board of directors on my wall as a young teen, I won’t be surprised if J has a poster of these men someday. There are positive role models throughout the Marfan and related disorder community, but there is something particularly special about having some in the public eye.