For The Record

As advocates from across the country descended on Capitol Hill for The ALS Association’s annual Advocacy Day on May 11, 2005, the United States Senate held a hearing specifically focused on ALS.  This was the second hearing ever to be held by Congress specifically on ALS.  In fact, very few diseases have ever been the sole subject of a Congressional hearing. 

The May 11 hearing, which was convened by the Senate Appropriations Committee, Subcommittee on Labor and Health and Human Services, provided the ALSA family a unique opportunity to tell the ALS story to some of the most important Members of Congress. 

The Subcommittee has jurisdiction over funding for ALS research, including all funding for the Department of Health and Human Services and the National Institutes of Health.   The Subcommittee also has jurisdiction over funding for two of our Advocacy Day priorities:  establishing a national ALS registry and legislation to expand the availability of quality respite care services for PALS and their families and caregivers.

Testifying before the Committee were:

• Dr. Story Landis, the Director of the National Institute of Neurological Disorders and Stroke (NINDS), which conducts and funds the majority of federal research on ALS.  Dr. Landis provided the Subcommittee with an overview of NINDS’ efforts on ALS and the challenges facing the Institute.
   
• Dr. Lucie Bruijn, The ALS Association’s Science Director and Vice President.  Dr. Bruijn urged the Subcommittee to support increased funding for ALS research and to support ALSA’s advocacy priorities.  Those priorities include Department of Defense (DOD) funding for ALS research; the establishment of a national ALS registry; and legislation to expand the availability of respite care for people with ALS and their families. (Click here to read Dr. Bruijn’s testimony)
  
  Dr. Bruijn also used the forum of the hearing to announce the launch of TREAT ALS, an exciting new initiative to accelerate drug discovery for ALS.  TREAT ALS (Translational Research Advancing Therapy for ALS ) combines efficient new drug discovery with priorities set for existing drug candidates, to accelerate clinical testing of compounds with promise for the disease (Click here to view a multimedia presentation describing TREAT ALS www.onbluestudios.com/alsa).
   
• Eric Obermann, a 23 year-old PALS from Huntsville, Alabama.  Eric shared with the Subcommittee his experience as a young man living with ALS, beginning with his diagnosis as a freshman at Georgia Tech University in the fall of 2000.  Because ALS has robbed him of the ability to speak, to deliver his testimony Eric used a speech synthesis computer, which was given to him by a friend from his ALS support group who lost his fight with ALS last year.  Everyone in attendance at the hearing, including Senators and their staff, were visibly moved as Eric continued to describe his fight against the disease (Click here to read Eric’s testimony). One of Eric’s Senators from Alabama, Sen. Richard Shelby, chaired the hearing.
   
• Rob Borsellino, a columnist for the Des Moines Register and a constituent of the Subcommittee’s ranking Member, Senator Tom Harkin (D-IA).  Diagnosed with ALS earlier this year, Rob shared his experience and hope with Members of the Subcommittee and urged that more be done to find a cure for the disease.
   
• A celebrity panel of ALSA advocates also urged the Subcommittee to help raise awareness of the disease and commit the resources necessary to find treatments and a cure.  The panel included former Major League Baseball greats, Tommy John and David Cone, as well as actress Kate Linder, star of the daytime television series, The Young and the Restless.  Each celebrity advocate focused their remarks on one of The Association’s public policy priorities. 
   
• Tommy John urged support for DOD research funding and highlighted the studies showing an increased risk of ALS for military veterans (click here to read the testimony of Tommy John).   
   
• David Cone called on the Subcommittee to establish a national ALS registry, a vital tool in the quest for a treatment and cure for ALS (click here to read the testimony of David Cone).
   
• Kate Linder spoke of the importance of respite care for PALS and families and urged the Committee to support legislation like the Lifespan Respite Care Act (click here to read the testimony of Kate Linder).

Please contact Pat Wildman in the Advocacy Department at 1-877-444-ALSA or pwildman@alsa-national.org if you have any questions about the hearing or would like additional information.