RALEIGH, N.C. — The Centers for Disease Control and Prevention estimates as of 2017, there are over 31,000 people living with ALS in the United States.

There are many organizations out there to help those living with the disease, including a North Carolina ALS chapter, which recently separated from the larger national ALS Association to become ALS United North Carolina.

Originally, many small ALS organizations joined together to create one ALS Association, which was run as a federation. That meant there were separate but dependent organizations operating within a certain set of guidelines. The national ALS Association said this led to creating barriers.

The ALS Association felt in order to better support people living with ALS, it wanted to unify with the chapters to make one centralized organization. But 15 of its chapters did not want to unify, and instead joined together to file a lawsuit to block unification. A settlement was ultimately reached with those chapters, and they are no longer members of the ALS Association.

Spectrum News 1 spoke with Troy Tatum, a North Carolinian living with ALS who is supported by ALS United North Carolina. He said he thinks this new transition will be positive, and feels it could give the organization some freedom to design the care services to match the ALS patients right here in North Carolina.

“They know the context here, they know the clinics here, they know the doctors here, they know the durable medical equipment suppliers here. The relationships and community they build and the familiarity with the context tells me that we are in good hands, and I’m excited about the future with this new connection,” Tatum said.

Tatum said ALS United North Carolina has played an instrumental role in his journey.

“These are the folks who are on the ground and know the 900 something ALS patients in the state of North Carolina,” Tatum said. “They don’t just know me, they know my wife, they know my kids, they know what school they go to.”

Tatum found out about his ALS diagnosis at the beginning of 2022.

“This diagnosis makes you feel helpless,” Tatum said. “What is it that I can do? What is it that we can do.”

The diagnosis changed his life. He had to end his career as a pastor at Hillyer Memorial Christian Church, lean more on his family, and find new ways to get around.

“We live in a two-story house and decided to move down from the master bedroom from the guest bedroom from downstairs, which means I’m all on one level and so there’s frequent trips of back and forth up the stairs for them to get things that we need,” Tatum said.

One of his favorite hobbies is to play the guitar, and Tatum said the music has helped him through this challenging time.

“I have always enjoyed writing and well-written songs,” Tatum said. “As much as anything, given me some incentive to play as much as I can, to write as much as I can, to do as much as I can while my fingers are still working. Know that’s going to stop at some point, so trying to get some things down and recorded.”

CEO and president of ALS United North Carolina, Dave Shore, said the decision to not unify with the ALS Association was an easy one because having a centralized model doesn’t fit their goals. They want to be neighbors for their ALS community in North Carolina and keep the resources inside the state.

“We want my staff to be able to know the people we serve; we want them to know their first name and you just can’t do that in a centralized model,” Shore said. “So, we appreciate all that we did with them as a partner with them over the years, but we are really excited as ALS United North Carolina now, what we can do and some of the ways we can leverage more things.”

“We found out that 14 other like-minded state organizations felt the same. So, when you put all of us together now as we start to work on partnerships and collaboration as a new member organization down the road, you realize that we represented overall throughout the country almost half of the people living with ALS,” Shore said.

Shore said they will no longer have to give up some resources or cover costs to be a part of a national organization.

The ALS Association spoke with us about this transition as well. In a statement it said, “We are solely focused on our urgent mission of making ALS livable for everyone, everywhere, until we can cure it. We are currently funding $43 million in ALS research, including 149 research projects in 13 countries. Since the Ice Bucket Challenge in 2014, we have funded new ALS treatments, and we have increased our funding of ALS clinics from 34 to 98, including three ALS Association Certified Treatment Centers of Excellence in North Carolina. We are committed to ensuring that people living with ALS, regardless of where they live, should be able to access high-quality care and effective treatments.”