The power of social media has been on full display this past month as the ALS Ice Bucket Challenge has been take on by everyone from former presidents, famous athletes and Hollywood movie stars to your next-door neighbor. Videos of people dumping buckets of ice water over their heads to raise awareness and funds to combat the rare disease are flooding Facebook news feeds, Twitter timelines and Instagram and Youtube feeds everywhere.
The challenge has helped raise more than $31 million in donations to the ALS Association. Locally, the challenge has helped reinvigorate a fundraising effort to help Jim DeMuth, a Charlotte resident diagnosed with ALS (often referred to as Lou Gehrig’s Disease) earlier this year.
“I’m a believer that everything happens for a reason and the timing of this challenge has really helped,” said Kacie Halsted, a co-worker of Jim’s at Eaton Federal Savings Bank who started a GoFundMe site to raise funds to help offset costs of potential medical procedures. I’m surprised with all of the Ice Bucket Challenges and how much that has helped. Donations kind of slowed down a little bit, but after these challenges it’s really picked back up.”
In just 21 days the GoFundMe site has raised more than $4,600, just shy of the $5,000 goal Halsted originally set.
Word of the GoFundMe site spread quickly after Charlotte residents Jenn Jones and Jeremy Tuller got the Ice Bucket Challenge started with the specific goal of donating to the site. Jenn’s husband, Bill Jones also created the Just for Jim golf outing set for Saturday, Sept. 27 at Maple Brook Golf Course in Charlotte.
Bill Jones said once he heard his family friend had been diagnosed he initially felt helpless, but he knew he wanted to do something to help.
“I though an outing in Charlotte involving his friends, his community and local businesses was one way I could help,” he said. “It’s been a humbling experience to see that kind of impact Jim as had one this community through the support the outing has received from local businesses, friends and local residents. The amount of support goes to show how great he is and what he means to the community.”
The annual Kurt DeMuth Memorial Golf Outing, held in memory of Jim’s son who passed away in 2007, is set for Saturday, Sept. 20 and will donate all proceeds to Jim’s battle with ALS.
According to the ALS Association, ALS (Amyotrophic Lateral Sclerosis) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. As the disease progresses individuals lose the ability to initiate and control muscle movement. There is currently no cure or treatment for ALS that halts or reverses symptoms.
Jim is in the early stages of ALS and has been mostly been affected in the muscles in his hands, which has made gripping and coordinating movements difficult. Being in the early stages means he is a prime candidate for potential stem cell treatment. The problem he is facing, however, is finding a doctor or clinic that has an opening for what is considered experimental treatment.
“When he told us that he wanted to go forward with treatment and how much it would cost, the light bulb went on to start the site,” Halsted said. “I’m willing to do anything to help him. I’m so glad he is fighting and not giving up.”
For more information or to donate visit http://www.gofundme.com/c2prek.
