More than 570 ALS advocates from across the country joined together for the 2018 National ALS Advocacy Conference in Washington, D.C., on May 13-15. Nearly every state in the country was represented, with 22 advocates hailing from Texas.
Stacey Crowder was one of the Texans who went to D.C. to advocate for People with ALS. Stacey was diagnosed with ALS on August 11, 2016. He’d first noticed a slight twinge in his left bicep earlier that year, and when he received an ALS diagnosis, it took him and his family on an emotional roller coaster. At first, Stacey was devastated and scared, but he was able to cope by relying on his spirituality and the support of his friends and family.
When Stacey first learned about the conference, he wanted to attend because it felt like he could make a difference.
“I think it’s important for persons with ALS to make their voice heard,” Stacey said. “And since I can’t do the physical things or raise the kind of money it takes to fund research on my own, I felt it was my duty to do everything I could as best I could.”
On the first day of the conference, advocates gathered to learn about the latest in ALS research, care services programs, and advocacy efforts. They learned about the 2018 public policy priorities that they’d be advocating for on Capitol Hill. And congressional staff from the offices of Senators Sheldon Whitehouse (D-RI), Bill Nelson (D-FL), and Dr. Bill Cassidy (R-LA) provided important updates. They also heard from Calaneet Balas, President and CEO of the ALS Association, and Dr. Lucie Bruijn, MBA, the Association’s chief scientist.
“I learned so much at the conference,” Stacey said. “I learned about the wonderful people involved with the conference, advocacy, and multidisciplinary care facilities, as well as the research projects in the pipeline. Lastly, we learned about the process of making requests of lawmakers and telling our stories.”
On the second day of the conference, the advocates went to Capitol Hill for meetings with Texas congressional staff, including the representative of their congressional district. where they shared their stories and advocated for public policy initiatives that would improve the lives of people with ALS and increase research funding. With over 20 meetings with key legislators, advocates made the following legislative asks:
- Ensure at least $10 million in appropriations for the ALS Registry at the Centers for Disease Control (CDC).
- Ensure at least $10 million in funding for the Department of Defense’s (DOD) ALS Research Program.
- Support increased funding for the National Institutes of Health (NIH) in FY2019, especially in the National Institute of Neurological Disorders and Stroke (NINDS).
- Pass the ALS Disability Insurance Access Act (S.379/H.R.1171) to waive the five-month waiting period for patients with ALS before receiving benefits under Social Security Disability Insurance.
One of the most impactful experiences for Stacey was meeting so many people struggling with ALS but fighting every day to make a difference and not letting the disease strip them of their self-worth.
“There are so many people out there who want to help me, and that gives me hope!” Stacey said. “It means so much to me that so many people care to go fight every day to get the help needed to defeat this disease.”
Six people with ALS and their caregivers attended the conference thanks to funds raised at Max’s Ride for ALS. Max’s Ride is an annual motorcycle ride through Texas Hill Country in memory of Max Harrison. Max and his friend Whitney Sadler were deeply impacted by the 2002 ALS Advocacy Conference they had attended, so when Whitney began Max’s Ride in 2007, she decided to use the proceeds to sponsor Texans attending the conference. Since 2007, Max’s Ride has raised over $225,000.
Thanks to the ALS Association’s Advocacy Program, the following legislative priorities have been achieved:
- Annual government funding for ALS research has increased from $15 million a year to over $80 million a year, including a total of more than $950 million since The Association created a Public Policy Department in 1998.
- Eliminated the 24-month Medicare waiting period for people living with ALS, the only time the law has ever been changed since Medicare was created.
- Social Security Administration issues presumptive disability regulations for ALS, making it easier for people with ALS to receive disability benefits.
- Helped to implement historic regulations at the Department of Veteran Affairs that designate ALS as a service connected disease, ensuring veterans living with ALS and survivors have access to VA benefits.
- Led effort to enact the ALS Registry Act, which created the National ALS Registry, which is the largest ALS research project ever created.
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