On the evening prior to the National Advocacy Day and Public Policy Conference in Washington, D.C., the single largest gathering of amyotrophic lateral sclerosis (ALS) advocates from across the nation, The ALS Association honored individuals at its rally dinner who have and continue to be leaders in the fight against this devastating disease.
Sponsored by Permobile, BAYADA Home Health Care, The Biotechnology Industry Organization (BIO), Biogen Idec, The Pharmaceutical Research and Manufacturers of America (PhRMA), Pfizer, Sanofi and Ellyn Phillips from the Greater Philadelphia Chapter, the rally dinner included keynote addresses from two former National Football League (NFL) players with Lou Gehrig’s Disease, O.J. Brigance and Steve Gleason. The Association recognized them for not only being heroes on and off the field but also for their courageous efforts to raise awareness and funding to help people with this disease.
The ALS Association presented several awards, which included the Jacob K. Javits Public Service Award, two Advocacy Achievement Awards, and a Certificate of Appreciation.
The Jacob K. Javits Public Service Award is presented to the individual or individuals who exemplify the qualities of leadership, compassion and commitment to public service so heroically demonstrated by U.S. Senator Javits of New York, who lost his life to ALS in 1986. The Association presented this award to Congresswoman Chellie Pingree, who, since first elected to the House of Representatives in 2008 from Maine’s first congressional district, has consistently supported issues important to people with ALS, including both the National ALS Registry and the ALS Research Program.
The Association also presented two Advocacy Achievement Awards. The first was presented to New Gloucester, Maine resident Ernesta Kennedy and her three boys, Tyler, Chase and Drew. Kennedy’s husband Josh served in Iraq during Operation Iraqi Freedom and was lost to ALS just over a year ago at the age of 34. Josh was a loving husband and father and a tremendous advocate, working tirelessly with The ALS Association, Congresswoman Pingree and the rest of the Maine Congressional delegation to advance ALS issues in Congress. Since Josh’s passing, Kennedy continues to be very involved in the fight, sharing her ALS story and making a difference.
Ted Harada also received an Advocacy Achievement Award for his tremendous efforts that have defined him as one of the most effective and passionate ALS advocates. He was diagnosed with ALS in 2010 and continues to serve on the Board of Directors of the Georgia Chapter, chairs the chapter’s Public Policy Committee, has organized a state advocacy day in his state capitol, has published letters-to-the-editor to build support for ALS issues, and has led his chapter’s delegation to the Advocacy Conference in each of the past two years. In fact, this is his third trip to Washington, D.C., to advocate in 2013.
The evening concluded with the presentation of a Certificate of Appreciation to Kate Linder and her husband Ron. Linder is a star of America’s top-rated daytime television drama, The Young and the Restless, and has played the role of Esther Valentine on the hit show for more than 30 years. Linder has been one of The ALS Association’s celebrity spokespersons since she joined our fight following her brother-in-law, Scott’s, diagnosis with ALS in 2004. Her husband Ron has played a significant role behind the scenes, advocating on Capitol Hill and across the country on behalf of people with ALS and their families. Ron recently secured a significant bequest for ALS research, a major victory for our fight against the disease.
The ALS Association appreciates the support of not only its corporate sponsors but also the committed advocates, caregivers and family members who journeyed hundreds and even thousands of miles to advocate on Capitol Hill this week. To become an advocate, please visit www.alsa.org/awareness-advocate.