"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
My name is Helen Rutherford and I am a counsellor based in the North East UK. I have a physical disability (SMA type II) and am an electric wheelchair user. I am currently doing some market research into setting up a unique counselling service as I have several years professional experience and a lifetime of personal experience of living with a physical disability. I believe this gives me insight into everyday issues, emotional difficulties, relationship dynamics and I can use this…See More
Hi I am new to the group. My daughter has SMA type 1. I have been doing A LOT of research on forms of medical cannabis as it pertains to treatment of neurodegenerative damage however I can't really find anything about CBD and it's possible effects on patients with SMA. does anyone out there know of any studies done on this? Info of any kind would help! I looking for Studies published in medical journals, private studies...etc, or your own personal experience even. Thanks
the Voiceitt indigogo campaign launched. I really think this can make an impact on the quality of life for SMA and also for other family members and friends.
Please join the effort and forward this to who might be…"
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.