2 days Ago
Sarah Brendle loved playing tennis when she was younger.She’d love to play now with one of her children who picked up the hobby, but she can’t hold a racket for more than a few minutes. ALS robbed the 52-year-old of that ability.
It also prevents the Pennsburg resident from working, or even leaving home often.Now she fears federal funding cuts will cost her a potential new treatment that could prolong her or another ALS sufferer’s life.“The [National Institutes of Health] funding is so important and the clinical trials that are already ongoing are helping to find better ways to diagnose the illness,” she said.
As part of cost-cutting measures across the federal government, the Trump administration last month instituted a new National Institutes of Health policy that would strip research groups of hundreds of millions of dollars, according to the Associated Press. Those cuts were later put on hold by a federal judge.Other Trump administration moves have also threatened ALS research.
A Harvard Medical School professor told the Washington Post that he was ordered to stop work this week on his ALS project that uses hundreds of thousands of federal grant dollars annually after the government froze money for Harvard University as part of a dispute over federal demands to limit activism on campus.ALS is a terminal disease that interferes with the nervous system and impairs one’s ability to control muscles, eventually stealing their ability to speak, swallow or breathe. “It took 18 months for me to get diagnosed and that is very common,” Brendle said.
“Funding for diagnosing the illness and drugs and therapies to treat the illness are extremely important. They are very time sensitive and patients don’t have time to wait around for a pause in funding. For me, the clinical trials and the research is the hope I have to cling on to.
I could wake up tomorrow and my illness could start progressing much more quickly.”Brendle, who was diagnosed at age 36, has a relatively uncommon slow-progressing version of the disease. People usually live only three to five years after they’re diagnosed; about 1 in 10 people with ALS live longer than 10 years after diagnosis, according to the nonprofit ALS Therapy Development Institute.
In the United States, 5,000 people are diagnosed annually with ALS, according to Tony Heyl, director of communications and public policy for ALS United Mid-Atlantic. a nonprofit that advocates for the ALS community. Ongoing ALS research is imperative, Heyl said.
He said studies have made an impact for the 1,200 patients ALS United-Mid Atlantic cares for, including ones in the Lehigh Valley, but more needs to be done — the disease has no cure.“Research is critical toward finding new treatments and therapies for ALS,” he said. “Scientists from across our region and throughout the world are addressing the causes and symptoms of ALS through studies into biomarkers, genetics, environmental causes and more.
We have seen significant advances with new treatments approved over the last decade, but it is not enough.”Like Brendle, Jessica Cassium, 58, of Whitehall Township has slowly progressing ALS. Her symptoms started in 2015, with cramping in the legs, then spread to her torso, arms and back; she was diagnosed in 2018.
Now her legs are failing her, and her speech is wavering.“ALS is a beast,” Cassium said. “I can still feed myself, but it’s getting harder.
I rely on caregivers to manage food prep, personal care and home chores. It took three years for my diagnosis. With an earlier diagnosis, I could have been able to qualify for different trials.
My limited motor skills and ability to even breathe is very frustrating to manage even the simplest activity. I want to do so much more, but I know I’m unable to. Nobody wants to live with this.
I’m at the point where I don’t want to be a burden on anybody. So every little bit that I lose, I’m closer to an end.”ALS research has received hundreds of millions of dollars from the federal government and private sources in the last decade, according to Heyl.
He said it has led to advancement in treatments, care and therapies to offer a better quality of life.Larissa Gibbons, program coordinator with ALS United Mid-Atlantic, said ALS research already is underfunded.“My father passed away from ALS, and I saw firsthand how devastating this disease is — not just for the patient but for the entire family,” she said.
“There is no cure, and the progression is relentless, stripping people of their ability to move, speakand eventually breathe. Watching someone you love go through that without any effective treatment options is both heartbreaking and life-altering.”“Research is the only path to find a cure or treatments that can slow the progression of the disease,” she said.
Heyl fears cutting ALS funding would mean delays and setbacks. Time is of the essence, he said: An ALS patient who would qualify for a clinical trial today, might not in a few months.“I’ve met a lot of ALS patients and family members and they know there’s not going to be a cure for them but they don’t stop living,” said Valarie Schwarz of Bethlehem, a visiting volunteer for a Lehigh Valley ALS patient, and former ALS United Mid-Atlantic board member.
Schwarz’s dad was diagnosed with the disease in 1982, and he lived with it for four years. In the years since his death, Schwarz has been involved in many ALS endeavors.“They don’t stop working for ALS.
They get involved with clinical trials. They do advocacy. They speak to legislators, and that’s how we got a lot of services in place,” she said about those with the disease.
“They do it for the future. They do it for people who are living now. It’s their legacy.
And when you stop doing research, you’re kind of destroying their legacy.”Sunni Battin is a freelance writer..
