Latest Activity

Kristen Aleman is now a member of SMAspace
Profile IconMeredith Bugenske and Chaya joined SMAspace
Sep 24
tj bennett replied to Jen (Boro) Peters's discussion HOW CLOSE ARE WE TO A TREATMENT OR CURE???/
"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…"
Sep 23
Lisa Oltmans liked Ashley's photo
Sep 22
Lisa Oltmans replied to Katie's discussion Awaiting Diagnosis
"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…"
Sep 16
Profile IconAndris Dindzans, Martins Zigurs, Good Samaritan and 1 more joined SMAspace
Sep 9
Katie posted a discussion

Awaiting Diagnosis

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
Sep 5
Katie is now a member of SMAspace
Sep 5
Laurie Brooks liked Ashley's photo
Sep 3
Ashley posted a photo


This is my daughter abby she has sma we are new to the site
Sep 1
Lissa M is now a member of SMAspace
Aug 29
Helen Rutherford posted a discussion

Professional SMA counselling service in the UK

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
Aug 27
Profile IconAshley and Helen Rutherford joined SMAspace
Aug 27
Rashad Bakker posted photos
Aug 27
Cynthia Cummings posted photos
Aug 26
Cynthia Cummings posted a discussion


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
Aug 21
Profile IconCynthia Cummings and Ali J joined SMAspace
Aug 21
Shelley Byrd replied to shahar(Lior's dad,2.5 yr Girl)'s discussion VoiceIt - translating non comprehensible speech
"So exciting! "
Aug 14
Noelle is now a member of SMAspace
Aug 13
Kirsten Cloutier Grabo is now a member of SMAspace
Aug 11



Started by Jen (Boro) Peters in Other. Last reply by tj bennett Sep 23. 95 Replies

Awaiting Diagnosis

Started by Katie in Other. Last reply by Lisa Oltmans Sep 16. 1 Reply

SMA Links

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.




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