A New Jersey mother, eight years after receiving a life-destroying diagnosis, believes a “stunning” new drug can stop her disease.
Raziel Green, 52, is an active runner and mother of two, diagnosed with Rare forms of ALS 2017.
The former retail manager first started experiencing symptoms more than a decade ago when her legs began to feel heavy as they usually run easily, Green told Fox News numbers in an interview on camera.
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“A few months later, I started struggling on the stairs of my house,” she recalled.
A few months later, when Green began to experience balance problems and muscle loss, she decided to see a neurologist and he told her that there was nothing wrong.
Raziel Green, 52, is an active runner and mother of two (photo with the child), who was diagnosed with a rare form of ALS in 2017. (Raziel Green)
Knowing that her mother and aunt were diagnosed with Rare forms of ALSGreen pushed for more opinions and tests. It wasn’t until she saw a third neurologist specializing in genetic diseases that she was diagnosed with the superoxide dismutase 1 (SOD1) gene and amyotrophic lateral sclerosis (ALS).
The disease is caused by mutations in the SOD1 gene, accounting for about 10% to 20% Cases of genetic ALS According to the ALS Association, 1% to 2% of sporadic ALS cases.
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Shortly after the diagnosis, Green learned about the clinical trial of a Mass General’s experimental drug, Qalsody® (Tofersen), manufactured by Biogen in Cambridge, Massachusetts.
The drug is administered through the lumbar spine every few weeks through the lumbar spine.
“We can speculate that treatment can be performed early because the drug targets DNA, but these trials have not been conducted yet.”
“I have the chance and am lucky to be part of the trial,” she said.
“I really want to do this by knowing we have genes. Me and my familybut for others with this ALS. ”
“This gives my kids the opportunity to be tested and use this medication as a preventive treatment,” Green said of the drug Qalsody. (Raziel Green)
Green said within four months that she saw a “huge difference” and has never gotten worse since.
“I saw a neurologist who compared notes from now until seven years ago and she couldn’t see anything different from the day I was diagnosed.”
Benefits and risks
According to Timothy M. Miller, MD, M.D., vice chairman of Neurology Research and co-director of the ALS Center at Washington University in St. Louis, Timothy M. Miller, MD, PhD, M.D., Qalsody is specifically used to treat the SOD1 form of ALS.
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“About 20 to 25% of people who receive Qalsody treatment with SOD1 ALS not only show slowdowns, but progress has stopped completely or shows signs of improvement,” a doctor who is not involved in Green Care told Fox News Digital Digital.
Dr. Thomas Purvis, a neurologist at the Rockefeller Institute of Neuroscience at West Virginia University, called Tofersen one of the “most exciting drugs” of ALS in recent years.
Green told Fox News Digital that the former retail manager first started experiencing symptoms 10 years ago when her legs began to feel heavy when they were usually easy. (Raziel Green)
He said that while the benefit seen during the 28-week trial was “humility,” patients have long been starting to look and feel better.
“It’s usually the case Clinical trials For chronic disease – This will be better appreciated when patients receiving treatment are treated for longer periods of time, so it is hard to say how much benefit we can expect to see in the long run. ”
“We can speculate that treatment can be performed early because the drug targets DNA, but these trials have not been conducted yet.”
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Some side effects have been seen in a small number of patients taking Qalsody.
“In clinical trials, about 7% of patients treated with Qalsody had severe side effects, including osteomyelitis (inflammatory in the spinal cord), radiation (nerve pain), intracranial pressure rise and some others,” Miller shared with Fox News Digital.
Green hugged her son in one of his hockey games. Green said her medications allowed her to participate in children’s sports competitions, graduation and other milestones. (Raziel Green)
Includes some rare effects Severe headacheAccording to Purvis, powerlessness and loss of feeling.
“In the end, we don’t know the long-term consequences of decades after exposed patients to these therapies simply because they haven’t been around for long enough,” he added.
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“However, the current data seems to tell us that these therapies are safe.”
Stephanie Fradette, Pharm.D. , the head of the neuromuscular development unit of Biogen (the manufacturer of Qalsody) pointed out that in the third stage Valor study Qalsody processing Participants had a 55% reduction in plasma neurofilament levels, a marker of neurodegeneration, while participants treated with placebo increased by 12%.
Today, Green uses sugar cane full-time and wheelchair long distances, but given that her symptoms have not yet worsened, she is still able to do many of the things she loves. (Raziel Green)
As we look to the next step in ALS research, our work on SOD1-ALS shows that it is possible to slow down devastating neurodegeneration in the disease, Fradette told Fox News Digital. ”
“We are continuing to apply courses from recent SOD1-ALS research and the research done over the past decade to help us bring safe and effective treatments to the wider ALS community.”
“Hope keep moving forward”
Green expressed his gratitude for the opportunity to take Qalsody, which is now approved by the U.S. Food and Drug Administration (FDA) and is available for anyone diagnosed with this specific gene mutation.
“I can still travel. I can still get up. I’m still independent in my daily activities.”
Every 28 days, green goes Receive medication.
Today, her liquidity is limited. She uses cane full-time and wheelchair long distances – but given that her symptoms have not worsened, Green is still able to do many of the things she loves.
“When patients who are treated follow the treatment for a long time, you’re better grateful for the benefits.” Green, who took a photo with his son, said that since she started taking Qalsody, neurologists believe her condition has not differed. (Raziel Green)
“I can still travel. I can still get up. I’m still independent of my daily activities,” she told Fox News Digital. “I still go to the gym occasionally when someone is with me.”
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Green is also able to participate in her children’s sports competitions, graduations and other milestones.
She said the drug has provided “hope to keep moving forward” to green and other patients with the same genes.
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“This gives my kids the opportunity to be tested and use this medication as a preventive treatment,” Green continued. “That’s my main goal – to stay stable after treatment.”
