More than 900 ALS Advocates. Nearly 90 people with ALS. Over 20 military veterans with ALS. One goal: to urge Congress to step up the fight for a treatment and cure. That was the scene at The ALS Association's 2012 National ALS Advocacy Day and Public Policy Conference held in Washington, DC May 13-15.
The empowering three-day event included people touched by ALS from all walks of life and from nearly every state in the country who joined together in the nation's capital to make a difference. And that's exactly what they did!
Just three days after advocates met with Members of Congress, the House of Representatives passed legislation to provide $7.5 million in funding for the ALS Research Program at the Department of Defense, a 17% increase over last year! And we more than doubled the number of cosponsors of the MODDERN Cures Act, legislation that would stimulate and expedite the development of new treatments for ALS. These accomplishments are swift and significant -- two adjectives not typically associated with Washington these days. However, the quick results prove that people with ALS -- indeed all people touched by the disease -- have the power to make a difference. And that power lies in their personal stories, which move Members of Congress to action.
But there were many other impactful and memorable moments during this year's conference. For example, Dr. Kevin Horton who leads the National ALS Registry at the Centers for Disease Control and Prevention unveiled exciting new features of the registry, including new modules that will collect additional information about the disease, such as head trauma, which can help researchers find the cause of ALS. He also announced the launch of a new tool that notifies people enrolled in the registry about clinical trials for which they may be eligible to participate.
The conference also featured the first ever "familial ALS Summit," where participants learned about exciting research related to fALS and were able to share their personal experiences with each other about the issues that are unique to fALS. Additional details, including a video of the fALS session, will be available online soon. Other sessions featured renowned ALS researchers and representatives of the pharmaceutical and biotech industries who discussed the latest advances in ALS research and the promising clinical trials underway. And for the first time, several of the conference sessions were streamed live via The Association's Facebook page so that those who could not make the trip to Washington could still participate in the conference. You can view those sessions here: http://www.facebook.com/alsassociation#!/alsassociation/app_142371818162.
Just prior to meeting with Members of Congress on Tuesday May 15, the conference took time to recognize those exceptional advocates whose outreach and efforts to Congress throughout the year are an example to all of us that nothing is impossible and that what we do does make a difference. Those honored included Rob Tison who received the Rasmussen Advocate of the Year Award for his persistent efforts to encourage others living with ALS like him to follow his lead by embracing advocacy and public policy as a means to find a treatment and cure. Also honored was Elroy Chun, who lost his wife Peggy to ALS and who has logged nearly 5,000 miles from Hawaii to Washington DC over the years to make ALS a priority for his Members of Congress, which include the Chairman of the Senate Appropriations Committee.
While every ALS advocate is a hero, The Association recognized two heroes from the world of professional sports for advancing the cause. Presented with the Packman Award was former NFL star with the New Orleans Saints, Steve Gleason, who was diagnosed with ALS in 2011. Since his diagnosis, Steve has taken the fight to the disease and raised awareness and built support across the country and all over the world. His mother Gail and Aunt Maureen accepted the award on his behalf and rallied advocates with what has become Steve's call to action, declaring "No White Flags!” And The Association recognized former Major League Baseball great Tommy John for his advocacy which began more than a decade ago when his friend and New York Yankee teammate Catfish Hunter was diagnosed with ALS.
Senator Lisa Murkowski (R-AK), who's own family has been touched by the disease, closed the awards by energizing advocates as they headed to Capitol Hill telling them that their stories make the most difference and that their advocacy will help find the treatment and cure for ALS.
Of all of the memorable moments of the 2012 Conference, the annual Candlelight Tribute Rally arguably was the most moving, for it reminded everyone in attendance why the ALS community joins together in Washington each year: to tell the ALS story -- our personal experiences and those of our loved ones -- as we light the way to a world without ALS. A video of the 2012 Tribute Rally can viewed on our YouTube Channel at http://www.youtube.com/watch?v=1bcvVHtD2-U&feature=plcp.
Photographs that capture the power, emotion, and hope that were so prevalent during the conference are now available for viewing and download free of charge at http://scottfoto.zenfolio.com/alsa/washingtondc/2012. The password to access the galleries is Gehrig (it is case sensitive).
Did you take photographs during the Conference? If so, please share them on our Facebook page, http://www.facebook.com/alsassociation, and let others see the power of your experience in Washington!
Thank you again to everyone for your continued efforts. Together we are making a difference!