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Question
My brother is a scientist. He is still in school but he already has 2 research papers published. Anywho, Last Saturday My other siblings came to celebrate his birthday. At some point, We all started to talk about politics. Probably not a smart idea but still. My brother the scientist He said that Since the president is cutting all funds for Scientific research, My brother won’t have a job once He finishes school. Not the job he wants. And then I said, ”Wait a minute.Does that mean that the research being done for SMA treatments Is no longer possible?” He said he doesn’t know for sure but probably. And that terrified me. When DeAnn passed away, I realized that SMA is still serious. I mean, She was Stronger and healthier than me In so many ways. And she was on treatment. I am not. I always thought that I would pass away before her. And then we both got the same Respiratory illness at the same time. Somehow I was able to Fight it and she was not? That terrified me. We need not only treatments, but a cure. So now my anxiety is super high. So my question is: Does anyone know if SMA research Has been stopped?
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7 Replies
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I would imagine that research will continue if for no other reason than because of how much money they can make off of drugs that treat SMA. Anyway, it’s possible that there could be less research or that funding for research could come from different places than it does currently, but I wouldn’t really worry about it too much. Not that you can necessarily help worrying, but yeah.
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Given that the person in charge of cutting government spending referred to us as the parasite class, you should be worried about a reduction in government funding for SMA research. Nobody is getting rich making drugs that treat SMA. There are not enough people with SMA to cover the costs of developing and bringing treatments to market without large government subsidies. Also there are no off label uses that could increase sales. That is why research and development of treatments is funded through the government’s orphan drug program.
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Hey @survivinglife yeah, these are some unprecedented times we’re living in right now. I understand how all-consuming fear can feel, and it is perfectly fine to feel this way. Our health is always at the forefront of our minds.
As of right now, research has not been halted. If you’re able, the best thing to do right now is call your representatives and advocate for yourself and research funding. Blake also brings up a good point that these drugs bring in a lot of money.
Time will tell I guess. The best thing you can do is prioritize your mental health during these times and advocate if you can. We’re always here for you, too.
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Unfortunately, there’s a lot of r&d (never mind science in general) that only gets done because it’s subsidized. When the goal is profit nobody is going to gamble much without a high chance of being able to turn a profit in the relatively near future.
Doing my best not to rage about current politics and culture so I’ll stop there.
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Thank you everyone.
My mental health has been terrible thanks to the Nursing home I’m living in, my older brother, My mom, etc. Now Trump,Musk, and Kanye are making it 10 times worse. These past few days have been almost blissful even though I was fighting for my life. I am extremely sick right now. I can barely breathe. Because of this, I’ve been sleeping a lot. I can’t worry about Trump and the other 2 when I am asleep. But I am awake now. 😑😑
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I would highly recommend you avoid reading/watching the news, considering how sensitive you are. Nothing tragic is happening. Most of R&D is funded by private companies and public donations. Take it easy, take care of yourself – getting scared and anxious doesn’t serve you any good. Get well soon, OK?
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On February 19, 2025, MDA held a webinar: “<strong style=”font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”>MDA’s Impact on Neuromuscular Research“. This very question on research funding was raised and the answer was very little funding came from the federal government. This was for all of NMD research, not specific to SMA. I did not note down (and don’t recall the percent mentioned) only that it was small. When they send out the link to the webinar in the coming week or so, I’ll run through it and try to find it and come back here and post the amount.
Obviously, what is going on and the rhetoric wording is unsettling and concerning, but I’d encourage everyone to focus on their mental health, self-care, and what we can control.
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