"Hi Annette, I'm not sure why it suddenly went private but it was about 2 sisters 1 was type 2 and the other was type 3. They looked early teens. I will do some more research and post the facility and Doctors name."
"I think now its the Isis SMNRx! There was a video posted a few days ago about a girl with type 3 out of Kansas MO who is in the ISIS clinical trial: New Drug for SMA shows Profound effects in clinical trial. It has now gone private!"
"Cosmo loved playing jump rope with his friends in first grade. Davis Made doesn't make this chair any longer. I am working on one that will be better and less expensive than this one. Look for us at the FSMA Conference next…"
"Laura, What a wonderful accomplishment. I'd check with your high school to see if they have a staff member who helps students with scholarships to college. Another resource is the public library. They will have reference…"
Hope is the welling up of possibilities that exist in every direction from the point where you find yourself right now. There is either hope or hopelessness. There is no such thing as false hope. If you find yourself in what seems to be a hopeless place, take two sheets of paper. On one, write down all bad things that can happen, and read it aloud. Tear that paper into ten thousand tiny pieces and burn it. Never speak of the bad things again and do not let others speak of them in your…See More
Hello all,I am going into my senior year of high school, and as the subject line suggests, have no intention of stopping there. I'm sure all of you are aware of the difficulties and expenses that are accessory to having SMA (Type II, for me). That being said, I'm going to need a fair amount of money to move out and strike off on my own in the grand world of college. I'm seeking scholarships. Does anyone know where I can find SMA/disability/advocacy related scholarships? To give you a slightly…See More
"Hi Susan, I am currently on a mission do have a better lifestyle by eating delicious healthy foods - and a small progress has been made already, in the last 6ish months I have lost approx 2 kilos and I wasn't fully committed to it. I would…"
The list was getting too long -- b/c there are SO MANY GREAT ORGANIZATIONS raising awareness and funding to cure SMA. Please visit this link to see the latest list of resources available to the SMA community.