Former East Carolina University football standout Chris Johnson has called for a revival of the Ice Bucket Challenge after publicly sharing on ABC's Good Morning America that he has amyotrophic lateral sclerosis, or ALS. The announcement has returned national attention to a fatal neurodegenerative disease with no cure and few treatment options.
For Public Radio East's Annette Weston, the story is deeply personal. Her mother was diagnosed with ALS in September 2022 – and died six months later, in March 2023. The speed of her mom's decline reflects the reality Johnson and many other families now face.
A viral campaign returns
The original Ice Bucket Challenge swept across social media in July and August 2014. Participants recorded themselves being doused with ice water, challenged others to take part and donated to support ALS research. The campaign raised more than $115 million for the ALS Association and helped accelerate research, expand specialized clinics and build a pipeline of potential treatments.
Johnson, one of the most accomplished running backs in Pirate history, said the widespread support following his announcement reminded him of the campaign’s power to unite people around one cause.
What ALS does to the body
ALS progressively damages the nerve cells that control voluntary movement. As those motor neurons deteriorate, people can lose strength in their arms and legs and eventually experience difficulty swallowing, holding up their head and breathing.
“There’s a brain and spinal cord, and a motor system that controls your muscles, movements and the strength of your body,” said Dr. Minji Kim, a neurologist with ECU Health who treats patients at the Jim “Catfish” Hunter ALS Clinic in Greenville. “Somehow, that area is degenerating. It’s dying. We don’t know why.”
Kim said the weakness can spread throughout the body and eventually affect breathing. Respiratory failure and complications from the disease are common causes of death.
One clinic, many kinds of care
Mary Grams, president and CEO of ALS United North Carolina, said Johnson’s prominence creates an important opportunity to help more people understand an illness that often remains invisible outside the families it touches.
“Somebody with that status brings so much more awareness to this disease,” Grams said. “People just don’t get it unless you’re somebody well known.”
Grams also lost her mother to ALS, about 30 years ago. At that time, families often made separate appointments with neurologists, occupational therapists, respiratory therapists and equipment providers. Today, multidisciplinary ALS clinics bring those specialists together in a single visit.
North Carolina has seven specialized ALS clinics. The model helps streamline care, but access remains difficult for rural patients who may travel hours for appointments. The burden grows as patients need ventilator support, power wheelchairs and specially equipped vehicles.
“As your disease progresses, it’s getting even harder,” Kim said. “You have to carry that machine. People are on a power wheelchair, and then you need special equipment to move that. You cannot have a regular car.”
Support beyond the exam room
At clinic visits, ALS United care coordinators help families navigate durable medical equipment, wheelchairs and grants. Grams said that guidance is essential because a diagnosis immediately presents emotional, logistical and financial challenges.
“They see all the disciplines, plus the care service coordinator who sits down with them and briefs them on how we can get durable medical equipment, how we can get a wheelchair and which grants they could apply for,” Grams said. “When you find out that your loved one has this disease, it is overwhelming.”
The financial pressure can be severe. Patients may lose the ability to work while their need for caregivers, medications and specialized equipment increases.
Planning early to preserve communication
Clinics increasingly recommend assistive technology early in the disease. Voice banking records a person’s speech to create a personalized digital voice. Eye-gaze systems use infrared tracking to let people operate computers and communication devices after they lose speech or motor function.
“Let’s get your voice banked right now,” Grams said. “Your speech can be fine, and six months later your speech can be gone. We encourage people to get the eye gaze so that when that time does happen, those devices are already in place so they can communicate.”
For people with advanced paralysis, those tools can preserve a measure of independence — allowing them to communicate, browse the web and stay connected with family.
How to help
ALS organizations encourage people moved by the renewed Ice Bucket Challenge to learn about the disease, support families in their communities and donate to patient services and research. ALS United North Carolina provides care coordination, equipment support, support groups and financial assistance to people living with ALS and their caregivers across the state.
People can donate directly to ALS United North Carolina through its online donation page.
Donations to the Jim “Catfish” Hunter ALS Clinic at ECU can be made through the ECU Health Foundation online portal. Select “Other” from the designation menu, then enter the clinic’s name.
