Photo: Andrew Rosen (right) presents a Certificate of Appreciation at the Orange County Walk N’ Roll to Cure Ataxia
Author: Andrew Rosen, Executive Director
The life of an Executive Director at a nonprofit like NAF is filled with many different tasks. While I enjoy coming to the office and working directly with our talented staff, I treasure the chances I have to get out on the road, meeting with our families, researchers, and pharmaceutical partners as we work toward finding treatments for Ataxia. Let me give you a brief look at a week in September:
I attended the 10th annual Minnesota Walk N’ Roll to Cure Ataxia. As you know, our Walk N Rolls take place around the country to help raise critical funds for our programs here at NAF. The Sweeney family started this event and is still very involved with organizing it, along with the help of countless volunteers. It’s still going strong 10 years in…no easy task for an event that takes extensive planning. It alone has raised well over $500,000 since its beginning. I was honored to represent NAF and enjoy a beautiful morning with our local Ataxia community.
Monday & Tuesday –
What a thrill it was to hear from the leading Ataxia researchers in the country at the Katie Campbell Clinical Trial Readiness Conference. NAF hosted the conference at the University of Minnesota. This annual meeting allows our primary investigators and coordinators from clinical sites around the country to meet in person, share best practices, and discuss how to grow participation in the natural history study that NAF helps administer. A number of pharmaceutical companies were also represented, and I can tell you there was a lot of buzz about forming a partnership between clinicians and pharmaceuticals to accelerate the development of drugs to treat Ataxia. Some of that buzz was just the brain power in the room!
I flew to San Diego and had the pleasure of meeting first with Earl McLaughlin, a former NAF board member. While Earl is living with significant symptoms of Ataxia now, his spirit and unwavering commitment to the Ataxia community is as strong as ever. Earl started the very first Walk N’ Roll in San Diego in 2007 in memory of his brother, Charley. I then visited with Jane and Larry Jaffe (after a quick visit to my in-laws, who happen to live a few blocks away!). Jane has led her Tea Time for Ataxia fundraiser for many years. Jane and Larry’s support of their daughter, Lisa, is inspiring, and their continued work for NAF is so appreciated. I made a final stop at a pharmaceutical company who is working in the rare disease space and wants to stay connected with the latest in Ataxia happenings.
I drove up to Los Angeles, and visited with Drs. Susan Perlman and Brent Fogel at UCLA. Susan is a board member and Medical Director of NAF, and she and Brent serve on our Medical Research Advisory Board. It was wonderful catching up with them and getting their thoughts on how NAF can best work with the pharmaceutical industry as the interest in developing drugs to treat Ataxia continues to grow. But oh…that L.A. traffic! I then fought my way to Orange County to wrap up my week.
What a privilege it was to speak at the Orange County Walk N’ Roll! NAF board member Cindy DeMint and her family have been running this event for 10 years now, and have built a true community gathering in support of NAF. Cindy and her husband, Gerry, have three sons with Ataxia, and as I said to the huge crowd on hand, they live life every day with grace, determination and humor. They are a true inspiration and a perfect example of why I am so lucky to do the work I do.
There you have it – a week in the life of the ED of NAF. I’m back on the road next week for our “Day on the Hill” in Washington, D.C., in support of International Ataxia Awareness Day on September 25th. I hope to meet many of you “on the road” soon!