The nonprofit ALS Association (ALSA) recently reflected on the successes its stakeholders achieved this year, ranging from access to specialized equipment and fundraising efforts to legislative advocacy work on Capitol Hill.
The highlights of this year include securing ongoing support among elected officials for the passage of a bipartisan measure easing insurance procedures for ALS patients, obtaining $10 million for the National ALS Registry and preserving ALS research funds at the Department of Defense (DOD) and collaboration with patient groups to uphold patient rights.
Additionally, ALSA achieved significant progress in advocacy efforts, convening more than 770 meetings with congressional representatives; lobbying for continued accessibility of wheelchairs, rehabilitative technology and speech-aiding devices; and planning a multiyear strategy to bring national policy into better alignment with Medicaid beneficiaries living with ALS.
“These accomplishments are critical in our mission to treat and cure ALS as quickly as possible,” ALSA said in its release.
Based in Washington, D.C., the ALS Association provides resources including community services, fundraising for research and patient assistance, and educational outreach about ALS, or amyotrophic lateral sclerosis, the progressive neurodegenerative disease affecting nerve cells in the brain and spinal cord, according to the organization.