On May 3-6, 2011, researchers, clinicians, friends and families joined together once again in Washington, DC for the 2011 FightSMA Annual Conference. It was a wonderfully productive, successful, and fun meeting and, as always, a great way for the SMA community to come together as one. FightSMA also had the pleasure of hearing J. Robbins (formerly of Jawbox) and his wife Janet, as well as Gordon Withers perform at the Families and Friends Dinner on Wednesday night. It was a fantastic performance and a real treat.
After a fruitful Researchers’ Meeting led by FightSMA Scientific Advisory Committee Co-Chairs — Dr. Christian Lorson, FightSMA’s Scientific Director and Dr. Alex MacKenzie — the Families & Friends meeting kicked off with a bang, including several visits to Capitol Hill to advocate for new SMA legislation. FightSMA announced in late April a new legislative initiative led by two key Members of Congress — Representatives Cathy McMorris Rodgers of Washington (R) and Lois Capps of California (D)—who have graciously agreed to be our legislative champions in this Congress. Both of these representatives sit on the Energy & Commerce (E&C) Committee and its Health Subcommittee. Families and researchers were encouraged to make visits to other E&C Member offices, urging them to support Representatives McMorris Rodgers and Capps in their efforts to develop legislation that will increase federal funding of clinical trials for SMA and other diseases.
We’d like to thank the following individuals for making visits to their Representatives’ offices:
- Dr. Adrian Krainer, FightSMA Scientific Advisory Board Member, for visiting Reps. Eliot Engel and Ed Towns (NY)
- Ms. Anne Meguiar, of SMA Angels, for visiting Rep. Jack Kingston and Sen. Johnny Isakson (GA) Special thanks to Anne for her continuing efforts on Capitol Hill.
- Mr. Joe Cueter, FightSMA Board of Directors Member, for visiting Sen. Debbie Stabenow (MI)
- Mr. Michael Calise, FightSMA Board of Directors Chairman, for visiting Sen. Sheldon Whitehouse (RI)
- Ms. Rebecca Hurst, of the University of Utah, for visiting Rep. Jim Matheson (UT)
- Mr. Bill Strong, Founder of Gwendolyn Strong Foundation and FightSMA Board of Directors Member, for visiting Rep. Lois Capps (CA)
- Mr. Duncan Elliott, FightSMA Board of Directors Member, for visiting Congresswoman Kathy Castor
- Dr. Ching Wang, of Stanford University, for visiting in the office of Rep. Anna Eshoo (CA)
- Dr. Bob Leshner, of USCSD and FightSMA Medical Director, and Mrs. Martha Slay, FightSMA President, for visiting Rep. McMorris Rodgers (WA)
- Drs. Chris and Monique Lorson, of the University of Missouri-Columbia, for visiting Rep. Greg Walden (OR)
- Andrew Creighton of Richmond and members of his family for visiting Majority Leader Eric Cantor (VA)
- Mr. Jeff Horton, of STOP SMA, for visiting Rep. Gregg Harper (MS) in the district
We urge you to schedule a visit with your Representative and Senators over the approaching Memorial Day recess and we are here to help you arrange this important meeting. Please contact Caroline Gibson (carolinegibson@fightsma.com, 804-515-0080).
Continue to watch our blog, Facebook and Twitter for updates on legislative action in Washington!
Below is a slideshow of some of the images taken during the conference:
