ALS cases predicted to increase almost 70% by 2040; Wake County women advocate for more research, funding

FUQUAY-VARINA, N.C. (WNCN) — Research shows we could see more diagnoses of an incurable disorder in the coming years.

According to a study in the National Library of Medicine, ALS cases are expected to increase almost 70% by 2040. The neurological disorder affects nerve cells in the brain and spinal cord that control muscle movement and breathing.

You may be familiar with the Ice Bucket Challenge, which started in 2014 and has significantly raised awareness for the disorder.

Julie Simermeyer and Coleen Tyler took part in the challenge in their Fuquay-Varina community, Carolina Gardens, last year.

The two became close friends through their advocacy, and they both lost their husbands to ALS within the past year.

“This is an absolutely horrid horrid disease,” Simermeyer said. ““I don’t know how I would’ve lived without [Coleen]. This woman has saved my life.”

“It’s been a journey and we couldn’t have done it without each other, honestly,” Tyler said.

“I just promised [John] that when he was gone, I would continue the battle to fight for other people,” explained Simermeyer.

Specific causes of ALS have not been determined individually, however, the study says as populations live longer, they become more at risk as they age.

“This is a disorder that needs the attention of the community,” said Dr. Jorge L. Almodovar, the Medical Director of UNC’s ALS Clinic.

In an interview with CBS 17, he highlighted the need for immediate care as families face the incurable disorder.

“It is much more common than we think,” he explained. “It’s just that we don’t see people around because people are home and they’re sick.”

While there is no cure, Dr. Almodovar said he and his team do everything they can to help families through the process.

“It’s very important to try and improve that survival and take very very good care of our patients so they feel that the quality of life in this period and this journey is one where life is still fun. Life is still worth living for,” he said.

“The availability quickly to have those resources, any needed education, is so important,” Tyler explained, sharing her firsthand experience. “The ALS clinic was the beginning of a wonderful resource that I wouldn’t have had a clue where to start.”

“It’s important that there be more financial resources for those that really need it,” said Simermeyer. “A lot of people aren’t old enough for Medicare, and they don’t have that.”

As researchers work to find a cure, Tyler and Simermeyer’s advocacy is expanding across the country. One goal is to participate in advocacy walks in all 50 states to fundraise for research.

Click here for more information about ALS.