ALS Awareness After the Ice Bucket Challenge

Social media newsfeeds across the country filled with videos of people pouring ice over their heads this past summer. The social media campaign to raise money and awareness for Amyotrophic lateral sclerosis (ALS), a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord went viral. The Ice Bucket Challenge helped the ALS Foundation raise more than $20 million, money the organization will put toward research for treatment and a cure. As the weather grew colder, the videos grew scarce, but the impact of the movement continues, going beyond even the amount of money raised.

“I think it was fabulous, because it really gives you hope,” said Frank Wojcik, a Commack resident diagnosed with ALS in 2012. “Now when you tell someone you have ALS, they know about it, they’re more conscious of it.”

Wojcik is very involved in the ALS Foundation of Greater New York. He attends monthly support group meetings and the chapter’s local events to help raise money for the cause. He hopes some of the money the foundation acquired this summer goes to improving the medication used to treat ALS.

“There’s only one medication, and it’s not very helpful,” he said.

Rilutek, the only drug approved by the FDA to treat the disease, slows its progression in some people, possibly by reducing the levels of a chemical messenger in the brain called glutamate. High levels of glutamate are sometimes found in ALS patients. Other medications are sometimes used to treat various side effects of the disease, but there is no reversing its course.

In addition to Classic ALS, Wojcik has Progressive Bulbar Palsy (PBP), a variation that specifically affects his ability to speak, chew and swallow. He relies on his wife to help him with everyday activities like dressing and supervising him when he walks in his walker. Though he initially hoped that working out would preserve his muscle strength and slow the progression of ALS, Wojcik can no longer go to the gym, something he loved to do before his diagnoses.

Kristen Cocoman, director of marketing and special events at The ALS Association Greater New York Chapter was impressed with the number of new donors the challenge brought to the organization, but considers the effect it had on patients and their families to be more important.

“The Ice Bucket Challenge has renewed everyone’s hope that now that there is this awareness. . .people will step up and there will be more research done, and hopefully this Ice Bucket Challenge will ultimately lead to finding a treatment,” she said.

Cocoman has heard stories of people learning that a family member or friend had ALS because of their participation in the challenge. She is hopeful that some of these people will continue donating to and supporting the organization at events.

“I do think that as [the challenge’s popularity] was at its peak point, the awareness was at the same level,” said Cocoman. The challenge, now that it is too cold for ice, is to keep the public motivated to help find a treatment for this fatal disease. The Walk to Defeat ALS held at Eisenhower Park every September is the largest one in the country. This year, 8,000 people raised more than $930,000 for the cause.

To find ways to help on Long Island, visit ALS Association Greater New York Chapter website.

esme mazzeo

Esme Mazzeo is a freelance writer and T.V. junkie who enjoys writing arts, culture, and lifestyle pieces. Follow her on Twitter @EsmeMazzeo