In May, over 600 ALS Advocates traveled to Washington D.C. for the annual 2017 National ALS Advocacy Conference. Once again, the ALS community came together to share their stories and to influence legislators on Capitol Hill – all to make a difference in the fight against ALS. And this year, Advocates continued to educate legislators on crucial issues that directly affect the lives of people living with ALS and inspire change.
We’d like to offer a sincere thank you to all of the advocates who participated in this year’s Conference and made their voices heard in support of the ALS community. This year we had a full agenda with research and legislative updates, followed by over 400 meetings with members of Congress and their staff. Our Advocates made an impact! Following the conference, 95 House and Senate members signed on to our three priority bills (as of June 2). You can encourage your members of Congress to sign on (or thank them if they already have) below:
Conference Highlights Include:
- Dr. Janet Woodcock, Director, Center for Drug Evaluation and Research addressed the participants. She discussed the FDA drug approval process, using Radicava as a prime example, which could be a game changer for people with ALS.
- Congresswoman Cathy McMorris Rodgers (R-WA), an original sponsor of The Steve Gleason Enduring Voices Act, also spoke at the conference. The Congresswoman discussed the legislation and how important it was to hear from her constituents, highlighting the hard work of the Gleason family.
- For the first time, participants received updates on our priority legislation directly from Congressional staff, including Andy Flick from the office of Rep. Seth Moulton (MA), Megan Perez from the office Rep. Cathy McMorris Rodgers (WA) and Nick Uehlecke from the House Ways and Means Committee, who gave tips on how to navigate the legislative process and spoke the importance of making your voice heard.
- Researchers from the ALS Research Program at the Department of Defense, the ALS Registry at the Centers for Disease Control and the National Institutes of Health who work on federally funded ALS research provided updates on progress made.
- At the direction of the family of Bill Young, the National Development Council presented a $100,000 check to The ALS Association during the 2017 National Advocacy Conference this year to honor William (Bill) A. Young III and in memory of Linda Hetrick and Lawrence Drury, family members of Bill who were afflicted with ALS. Bill served as a long-time member of the Board of Directors of the National Development Council. Diana Young, Bill’s wife, along with Bill’s two sons, presented Barb Newhouse, CEO and President of The ALS Association with a check earmarked for research. “When they asked me to identify an organization to which they could make a grant to honor Bill, I immediately thought of the ALS Association. You do such fine work,” said Diana Young on Sunday night’s opening session of the conference.
- This year’s conference boasted the largest number of corporate sponsors, including premier partners MT Pharma (Mitsubishi Tanabe Pharma), PhRMA (Pharmaceutical Research Manufacturers of America) and Cytokinetics.
2017 Award Winners
During the Conference, The ALS Association presented awards and honored some of our many heroes in the ALS community, including:
- Jacob K. Javits Public Service Award acknowledges a public servant’s legislative support and their efforts in raising awareness of ALS, the myriad challenges to people with ALS and their families, and other issues of importance of the ALS community. This year, based on the impressive nominations, the awards committee decided to give the award to three recipients:
- ALS Association All-Star Award is presented to an individual who exemplifies the qualities of compassion and commitment to the ALS community.
- The Rasmussen Advocate of the Year Award is presented to the individual whose personal initiative and efforts increase awareness of The ALS Association through education and advocating at the local, state or federal level.
Conference Photo Gallery
Along with the photos posted above, please take a look at and share the Conference photo gallery!
Kevin Allen Photography
The photos are free to download and will be available online until August 1, 2017. If you plan to use any of the photos, please credit the photographer, Kevin Allen.