WASHINGTON — Next Wednesday, a cadre of ALS patients will gather for a protest outside the FDA’s headquarters in suburban Maryland with a clear message: “No More Excuses.”
The rally is being organized by a ragtag group of ALS patients who connected mostly through Facebook, and it’s far less a production than other efforts like the 2014 ice bucket challenge that swept around the world.
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Excellent article. Thank you, Nick Florko. I hope you come to the protests. We will have signs. We have studied Act-Up. Read the Book: And the Band Played On. We’ve even gotten counsel from former Act-Up Members. What I do not understand is Gonsalves’ comments about the FDA. Act-Up’s activism against the FDA led to the approval of AZT- Still controversial today. However, it got drugs in the bodies of people dying from HIV/AIDS. Moreover, larger policy changes were made at the FDA including PDUFA- Prescription Drug Users Fee Act, Expanded Access and Parallel tracking. I am hoping that Golsalves just does not understand the plight of ALS with the FDA. We’ve asked for an ALS guidance document to develop drugs for ALS for over 5 years. We met with them in February 2019 and were promised it would be delivered in April 2019. We are still waiting. 2 of the 10 members at the meeting in February have died. The FDA requires placebo-controlled trials, for other diseases placebos, are considered unethical but NOT for ALS. My friend participated in the Nurown BrainStorm stem cell trial, her ALS progression STOPPED and she’s not the only one there are dozens of others( Dr. Glass has no idea what he’s talking about. He epitomizes what we are up against – many arrogant doctors with God-Like complexes who have failed at finding a solution to ALS so they say it can’t be done. ) My friend can no longer get access to Nurown and 6 months after her last dose, her progression has started again. We asked BrainStorm to continue to treat her as it is unethical to not treat someone who responds. Brainstorm says they do not have the funds to do so. That is unacceptable. Sorry Brainstorm, you are letting those in your trial die and progress when you know they are responders. In oncology, responders always continue on the therapy, why is this not the case in ALS? The FDA, the doctors, the ALS Association and Brainstorm are all failing us. Please join our fight. Help us!
As a cancer pt. activist we have walked this path. We protested outside the FDA and where FDA officials spoke . We understand the frustration of having s fatal disease and seeing treatments right there but out of reach . Know that others don’t get it – press , govt and yes pharma execs , doctors even . Even ACT UP a activists who have got theirs and forgotten where they came from . Fight On . Remember it’s not personal they weren’t trying to kill my wife years ago. They didn’t even know her . But their policies , views were killing her , so we Spoke Up . She got her experimental drug and is alive . But so many never got the chance. We are Dying and know it , all we ask is for that Chance
Those of us, in the USA, who suffer from one of the neuro-degenerative diseases, such as Amyotrophic Lateral Sclerosis, or Multiple System Atrophy, or Lewy Body Dementia, Alzheimer’s Disease, or others, know, only too well, that the urgency of needed research, and a breakthrough in treatment, that can slow, stop, or cure neuronal death/degenereration, would be advantageous, because, what’s at stake, is a person’s life span. It’s shattering to a person, when they are told by a neurologist, that they have an incurable disease, and the prognosis is in the single digits, many times. Patients need to hang on to hope! Hope, that a treatment will be discovered soon, that researchers in this great country, are funded, so that, perhaps, a cure could be discovered! Clinical trials of experimental, newly discovered treatments, need to be funded! Government allocated funds, for research, need to go, not only to studies on cancer, diabetes, heart disease, and many other ailments, but, also, to research into incurable neuro-degenerative diseases!
I also suffer from a rare disease, Dystonia. I think I should move to the front of the line.
What is unfair is having ALS and not even given a chance at a potential therapy. What is unfair is that the FDA has the same standards for ALS as they do for developing a drug for other disease states. What is unfair is that Dr. Glass and others refuse to support the ALS community and challenge the status quo. Shame on you and Dr. Glass. Come walk( or should I say ride in my wheelchair) shoes.
There is a big difference developing therapies when you know the exact cause of the disease and when you just don’t. The comparison this Group is making to other neuromuscular diseases is unfair and misdirected. Great Quote from Dr. Jonathon Glass.
I completely agree, Dr. Glass is spot on
Come on Jen, Why do you support the status quo. Are you drunk on the ALSA Koolaid. Wake-up
It’s time to do more. It’s been decades with little progress in halting or slowing down this disease.
Please go and support this protest and cause if you can. Writing emails is another way to participate.
Nurown by Brainstorm has shown to halt and improve ALS. The person mentioned in this article, Matthew Bellina, got the treatment under “right to try”
and has publicly shown remarkable improvement in strength and muscle function.
EXCITING Article but could someone take a moment to explain what the letters ALS stand for? Some folks do not speak you code. A lmost L ike S cience? A lways L ove S ugar??
Amyotrophic Lateral Sclerosis (also referred to as Lou Gehrig’s disease, a famous baseball player who was diagnosed with ALS)