"Hi I have a daughter with SMA 3 and since she has received the flu shots with the H1N1 strain she has experienced horrible autonomic nervous dysfunction symptoms. Currently our biggest concern is her circulation. Her feet turn purple much more…"
"Arms for Asher - Fighting SMA Together Today was a powerful day. An unexpected powerful day. It was Asher's 5th injection for a trial drug that is proving to benefit SMA babies. This drug is not a cure, but it is an effective treatment. It is…"
It's starting - that season when germs have a heyday. I hope that everyone is healthy and staying home this cold and flu season. If circumstances work out that you must take your loved one to the hospital, be prepared with a bag of survival items ready to go at a moments notice. I compiled this list over the 22 years that I cared for my son, Shane. SMA type I can put you in the hospital a lot. It’s surprising how many times people told me, “now you can rest.” Ha – they had no idea! Being…See More
SMA Moms / Dads / Caregivers, It never hurts to stock away some medical supplies. Insurance companies and medical supply companies frown upon this, so my practice was to build my own secret stock. The best way to accomplish this stock pile was to get a plastic storage container. When I was sole caregiver, for every supply I used, I put one into the storage container. Using this method, I built up a 3 to 6 month supply of these critical supplies. Then I hid that container, so I was…See More
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.