Almost a year ago, people around the U.S. were pouring ice water on their heads and ALS, also known as Lou Gehrig’s disease, was garnering unprecedented attention.
The 2014 “Ice Bucket Challenge” was a grassroots, viral social media campaign where people challenged others to pour a bucket of ice water on themselves or donate to the ALS Association. Since July, the challenge has raised $115 million, according to information from the ALS Association.
“When that hit, it hit strong and fast and took the nation by surprise,” said Dileep Dadlani, senior development coordinator for the ALS Association Jim “Catfish” Hunter Chapter in Raleigh.
The chapter covers North Carolina and supports the state’s five ALS clinics, including the Carolinas ALS Clinic in Charlotte.
Now, the ALS Foundation is hoping to carry on the Ice Bucket Challenge momentum in its annual fundraisers and awareness events. Charlotte’s annual Walk to End ALS is April 25.
ALS is a progressive motor neuron disease that attacks brain nerve cells. Eventually, the patient can no longer move muscles and is paralyzed. Patients usually live between two and five years after diagnosis, experts say.
Dadlani said the ALS Association knows of about 80 people in the Charlotte area who have ALS, which he described as a very large concentration. The Catfish Hunter Chapter has 624 people in North Carolina with the disease on its registry.
One of those people is Kristin McCoy, 47 and lives in Marshville. She was diagnosed with ALS in late 2012 after she and her husband noticed a change in the way she walked. Her legs became weak, and she began tripping and falling.
She said she once loved being active, playing tennis and exercising, and now can only walk with assistance. McCoy uses a walker or a power wheelchair for longer distances.
After her diagnosis, McCoy left her job with Harris Teeter, where she’d worked for almost 30 years. She now is an advocate for ALS awareness and fundraising and participates in the Charlotte ALS walk with her team, the Sunshine Seekers. Her group raised $25,000 last year.
“The walk is so much fun,” McCoy said. “There is so much energy, and everybody comes together for the purpose of raising money. All that’s raised can trickle down and be used to help families.”
The national ALS Association office focuses on research and advocacy, while its 39 local chapters help people with ALS and their caregivers.
The Catfish Hunter Chapter oversees a monthly support group for people with ALS and their caregivers at Novant Health Matthews Medical Center. Sarah DeMaison, a licensed clinical social worker with a private practice in Matthews, will become the group’s facilitator in May.
ALS can be expensive, and insurance does not cover many of the costs associated with it, according to information from the Catfish Hunter Chapter. The Catfish Hunter Chapter received $230,000 from Ice Bucket Challenge donations, which has been used to help families coping with ALS.
The chapter has increased its grants for families from $2,500 to $3,000. That money has been spent on on respite care, ramps, bathroom modifications, widening doorways and assistive technology devices that help people with ALS communicate and live more independently.
Charlotte’s Walk to End ALS is one of 170 held across the United States this year. It will be 9 a.m.-1 p.m. at Symphony Park, 4400 Sharon Road in Charlotte, and is open to everyone. The event will include live music, food and family entertainment, including a bounce house and face painting.
Marty Minchin is a freelance writer. Have a story idea for Marty? Email her at firstname.lastname@example.org.
Information and registration are available at http://web.alsa.org/site/TR/Walks/NorthCarolina?pg=entry&fr_id=10762#.VS5zWRe7HFo.