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
"AveXis Announces the Completion of Dosing of the Low Dose Cohort in US Clinical Trial for Spinal Muscular Atrophy Dallas, TX, October 08, 2014 --(PR.com)-- AveXis, Inc., a clinic-stage gene therapy company, today announced the completion…"
"AveXis Receives Orphan Drug Status from the US Food and Drug Administration (FDA) for chariSMA for the Treatment of Spinal Muscular Atrophy
Dallas – October 2, 2014 – AveXis Inc., a synthetic biology platform company primarily focused on…"
"Who pays? How @ all the foundations for starters?
Published on Sep 3, 2014Kate is currently involved in a ground-breaking clinical trial. Her family credits the trial for giving Kate increased muscle strength and the ability to climb stairs…"
"Hi Katie, I'm late responding to your inquiry. I am not sure if you've gotten an answer from your doctor yet. While physicians and the medical world separate kids with SMA into groups, in reality each case is…"
Hello,I am currently in the waiting for a diagnosis stage for my 7 month old son. He passed his 6 month well visit with flying colors, even though he seemed very delayed in milestones to me. He has loved to sit since 5 months but never started rolling, doesn't bear weight on his arms or legs, etc. Everyone kept saying he was perfect and just a lazy content baby. Cognitively he is so smart, already has 3 words and laughs all the time. Around 7 months I became increasingly concerned that I…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.