I am at the Denver Airport and waiting for the connecting flight. I will give three lectures on Wolfram syndrome in the next few days. The city of Denver always reminds me of one of our patients, Ellie White. I got to know Ellie and her mother Beth White several years ago. We started exchanging email about Wolfram syndrome. I also met with Beth in person several years ago in Denver when I was invited to give a talk on Wolfram at a medical science meeting. Ellie was a courageous young girl and was trying to raise awareness and funds for Wolfram syndrome, which really impressed me. Later on, her dance team, the Silhouettes, were asked to attend an audition for America’s Got Talent Season 6 in 2010. They advanced to the final and finished in second place in the competition. Ellie wanted to talk about Wolfram on TV and finally got a chance to do it at the end.
In Paris, I met with Nolwen, in Denver I met with Beth, and in Saint Louis I met with Stephanie. They are all dedicated mothers. I always feel that it has been my privilege to work for patients with Wolfram syndrome. Stephanie's efforts were featured in our local news paper. I hope you will read it and ask your friends to read it.
http://www.laduenews.com/society/charities-nonprofits/the-jack-and-j-t-snow-scientific-research-foundation/article_2623d048-c42a-558e-8d59-4c9deb04478b.html
