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

Hi guys , I am 22 years old.I live in the countryside of Malaysia.I'm here today to ask a small question. but my english level quite bad, hope you all who read this post can take some patient to understand my voice.

Since I didn't have a university, I only finished my second year of high school.I have graduated for almost four years，but I never know how my future will happen .To be honest, I always thought I was an ordinary person, because I went to an ordinary high school, and I only realized… read more

I am interested to find out what everyone does regarding having their fingernails clipped. I struggle with this because I need help doing them, and it's hard for someone to do them. I often end up with cuts on my fingers, and I do not like getting them cut. I always have long fingernails because of this, LOL. Any good best practices that anyone has come up with? I can't stand this. Did I mention that?!

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.

This has always been something I've had to deal with having SMA but within the last several years and the past few months, it has become much worse. Especially after eating or drinking and while trying to sleep. Often at night, I will wake up to choking and congestion from this.

I understand that this comes with the territory but could this be fatal? Can I end up drowning so to speak? If so, is it likely or probably not that likely to happen? I am 43 years old with SMA 2.

Hiii! You see, I have sma 2 and my neck is a little weak, I have been looking for a comfortable headrest for a long time but I have not been able to find one. They are all too big or do not reach the back of my neck, especially because my backrest is too high and I have been told that it can not be lowered. At home I have no problems but to go out in the street or to travel by car I have to take one of those neck pillows that are used to sleep on airplanes. I would like to replace it with… read more

Hi, does someone in the team has an idea about ataxia telangiectasia. It’s a rare neuro degenerative disease and not curable for the moment. I would like to know if there are any studies or tests in course. I’m personally following a young bit from Vietnam since 7 years. He 14 now. When I first saw him he was running and enjoying. Today he’s bed ridden and needs assistance for everything. Thank you

Pennsyvania peep what neurologist do you use and where are they im looking for a dr in pa so my insurance will be in network to pay?