15 nonprofits join to form new ALS group, ALS United
Regional groups pool resources to better address patient needs
Fifteen nonprofit organizations across the U.S. formed a new ALS group, ALS United, to better address the needs of people living with amyotrophic lateral sclerosis (ALS) and drive advances in research toward better treatment options or a cure.
The groups said they plan to pool resources to support and advocate for patients and their families at the state and national levels, and to promote research efforts worldwide.
Founding members include ALS Arizona, ALS Network, ALS New Mexico, ALS of Nevada, ALS United Ohio, ALS United Connecticut, ALS United of Georgia, ALS United Greater Chicago, ALS United Greater New York, ALS United Mid-Atlantic, ALS United North Carolina, ALS Northwest, ALS United Orange County, ALS United Rhode Island, and ALS United Rocky Mountain, the new organization said.
“ALS United embodies the collective vision of our founding members to deliver local support with national impact,” Jerry Dawson, president and CEO of ALS United, said in an organization press release.
ALS is a neurodegenerative disease that occurs when nerve cells in the brain and spinal cord become damaged and gradually die, causing muscle weakness and wasting. Symptoms of ALS become more severe over time, but adequate care can help patients live better lives.
Clinical trials, financial aid, insurance
ALS community members surveyed about their priorities identified three main areas of need: better access to research and clinical trials, more financial help, and improved healthcare and insurance options, ALS United said.
To address these needs, the group is partnering with more than 90 ALS clinics and experts across the U.S. to deliver community-based support, offer grants and support groups, medical equipment loans, and access to nurses and social workers.
ALS United is also engaging with policymakers to drive change, combining resources with the Northeast ALS Consortium (NEALS) and the American Brain Foundation, and investing in projects like the Accelerating Medicines Partnership in ALS and the ALS Research Innovation Initiative to find better treatment options for ALS.
“This collaboration enables us to harness decades of expertise, drive bold innovation, and advocate for transformative change,” said Dawson. “We are proud to take this vital step forward in the fight against ALS.”
About the Author
