ALS United NC breaks from national group; focuses on state chapter

ALS United North Carolina is now an independent nonprofit, no longer affiliated with the national ALS Association.

The nonprofit had operated a federated model, with a national office, but mostly independent chapters. ALS United North Carolina President Dave Shore said the national office wanted to switch to a more centralized way of running the nonprofit. Instead, the North Carolina group and ALS nonprofits 14 other states chose to break away and become wholly independent groups.

In many ways, Shore said, “this is not a change for us.” The nonprofit was mostly independent as an association chapter, and is now fully independent as its own nonprofit.

“Our main mission is to take care of our patients, their caregivers, and our entire ALS community here in North Carolina,” Shore said.

Amyotrophic lateral sclerosis (ALS), commonly called “Lou Gehrig’s Disease” after the baseball player who famously suffered from the disease that ended his career, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.

ALS United North Carolina funds some research and offers grants to clinics to focus on ALS care, but most of its work focuses on the roughly 900 people in the state who suffer from the disease.

“The care part is so important because if a family needs a power wheelchair, if they need a ramp for their home, we have those available in our loan closets, our equipment closets, throughout the state, and they’re able to get that for free.”

ALS United has 15 people on staff and took in $2.6 million in donations and grants in 2021, according to its most recent tax filing.