As she watched the Ice Bucket Challenge fill her Facebook feed last summer, Samantha Matusiak thought of her mother, who died the year before after battling ALS.
Amyotrophic lateral sclerosis, often called Lou Gehrig’s disease, inspired the viral phenomenon of people videotaping themselves dumping a bucket of ice water on their heads and challenging their friends to do the same or make a donation to the cause. Millions of videos circulated online and $220 million was raised globally to benefit ALS, an incurable disease that attacks nerve cells in the brain and spinal cord that control voluntary movement.
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Matusiak, a 28-year-old Chicago resident, remembered traveling for work and bringing along her mother. She would wear an ALS T-shirt and help her mother, who wore splints on her hands and legs, get around. Matusiak said they often got stares from people who didn’t understand the disease, but they would take those opportunities to spread awareness.
The Ice Bucket Challenge was something her mother would have loved to be part of, she said.
“My mom was skin and bones, but she would have been all about it,” she said. “I know she would have just been losing it. If anything, I know she would be excited that it’s gotten the attention it has.”
The National ALS Association and its 38 chapters collected $115 million since July 29. The Greater Chicago Chapter received about $250,000 in donations, said Maryilene Blondell, the chapter’s director of development. Those funds are earmarked for clinics throughout Illinois, new programs and annual advocacy trips to Washington.
In the second week of May, which is ALS awareness month, Matusiak will travel with 21 others to lobby Congress to support ALS research. This year, Blondell said the chapter was able to pay for twice the number of people to go to the nation’s capital.
The money from last summer’s outpouring of support also went toward a variety of projects, such as a new respite care program. Under one of the program’s options, a caretaker comes to a patient’s home to give family members time to rest or run errands. Anyone who is a member of the ALS association or a patient at a supported clinic is eligible to apply for a grant from the program.
A new ALS clinic was opened in Rockford and additional resources were provided to existing clinics in the Chicago area that care for patients and conduct research into finding a cure, Blondell said.
For Matusiak, finding a cure is personal. Her mother was the ninth person in her family to die from ALS.
She is currently involved in a study of people with familial type ALS and will be tested for the genetic markers of the disease. At 28, she said she wonders whether she should have kids and risk passing the genes on because “once you experience it you would never want to see it again.”
She said she had no doubt that she wanted to get tested for the gene. Part of it, she said, was knowing it was important to her mother to work toward finding better treatments and an eventual cure.
“My mom really drove it into me that research is what is going to get us there. So I do whatever I can to contribute,” she said. “A lot of people do think it’s crazy that I would want to find out. But everyone is different.”
On May 11, she’ll join others in Washington to lobby for research funding and legislation that could accelerate the search for treatments. Unlike other diseases, such as cancer, there are no options for medical management of ALS.
With lingering momentum from the Ice Bucket Challenge, Matusiak said she hopes lawmakers are more excited and aware of the disease than they have been in the past.
For Bruce Lindgren, a 58-year-old from Aurora, it will be his first time in Washington advocating for ALS. He was diagnosed with the disease in September 2013 and has gradually lost the use of his arms and legs.
“Lawmakers need to see the face of ALS. They need to see personally, firsthand, how their decisions can impact people living with the disease,” he said. “Finally a fair amount of research dollars are going into cures and treatments that was helped along by the Ice Bucket Challenge. But that’s literally a drop in the bucket compared to the need that’s out there.”
Still, he said, he has remained positive.
“The key for me is I don’t think about six months from now, I think about tomorrow and the next day,” he said.
Lindgren, a patient at University of Chicago Medical Center’s ALS clinic, hopes continued research will not only help increase understanding of ALS, but other neurological diseases, such as Parkinson’s disease or multiple sclerosis.
Dr. Raymond Roos, director of the U. of C. ALS clinic, said he is hopeful about the future.
At the clinic — named Illinois’ first ALS Certified Treatment Center of Excellence in February, which included a $50,000 grant — a multidisciplinary approach allows ALS patients to get treated by several medical specialists at the same facility. Patients may see neurologists, physical therapists, nutritionists, speech and swallowing specialists and mobility experts, in addition to others, Roos said, depending on what is appropriate for their stage of ALS.
“There have been some extraordinary advances in our understanding of ALS, and really some exciting treatment options are going to become … tested in rigorous trials in the next year or two,” he said. “I believe that we’ll have some really palpable treatment approaches that we never dreamed about 25 years ago.”
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