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Can someone of this group tell me something about myostatin inhibitors for people with SMA?

There was an article last November saying Zolgensma could be helpful for adults. Will they be doing a clinical trial on that soon? I have not seen anything further on it.

My son is almost 23 and an SMA Type 1. He has not wanted to do the spinraza but we are interested in the at home drug but not sure if people his age have taken it and what the outcomes have been. Any info would be much appreciated!

How do you earn money without loosing critical disability benefits and Medicare ? So, in many ways, I am very lucky. When I started needing attendant care, I did the math and there was no way I could earn enough money, keep working, and pay for attendant care. The programs in my state that cover attendant care very strictly require an individual have less than $2,000 in assets total (including such things as gold teeth, burial plots, etc) and not be employed. If not for my father's support… read more

On Wednesday, February 7, 2024 at 03:49:33 PM EST, Disability Coordinator wrote
Good afternoon
I wanted to let you know that I was able to speak with the provider we requested the hoyer through and they informed me that insurance decline the request and are unable to provide you the equipment. If you have any questions let me know. I will begin looking to see if there is a place to get one on loan.
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My Reply
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I don't understand how I can be denied ...the environmental assessment I had… read more

After a powerful storm last week, I discovered that both of the automatic doors on our house got damaged possibly from a power surge. The automatic doors are absolutely critical to my safety ...but last time called for service ...it was an $800 bill to repair one door. I need two doors installed by two separate companies repaired and can't afford what is likely a $2,000 bill. My coordinator for my disability program is already indicating that my disability program might not cover the cost of the… read more

Wheelchairs batteries just about completely dead. Put in for new batteries like a month ago. Are sitting in NuMotions storage somewhere. Earliest can come to install...September 1st. Tell them is emergency, batteries critical...spent entire day stuck at a table because batteries dead on Tuesday. Sorry...no one can come out until September 1st. What????😡

So, what is going on with NuMotion? I put in for replacement hospital bed remote in early July...they sent wrong remote...still not send right… read more

I am 40+ years old, have held jobs, am reasonably intelligent, but I still look like a teenager aside from a few grey hairs. My dad is 83, a little hard of hearing. My attendant, the only reliable attendant I can find in the entire state, is nearly the same age, is physically in much better shape, but is even harder of hearing. So I was dealing with my father who gets very grouchie when he hasnt eaten trying to help him with cooking which he doesnt know how to do and caregiver of course walks… read more