New SMARD blog

Hi all!! We have a new blog up at Come check it out! We are profiling SMARD kids as well as trying to raise awareness!

Chase Community Giving--PLEASE VOTE!!

Hi all! Currently the Gwendolyn Strong Foundation is in SIXTH place to win the million dollars. Please, if you have not voted for GSF, please do. All you need to do is go to, and you can help to cure SMA, and maybe SMARD. PLEASE HELP and…Read More

Chance at one million dollars for SMA research--please vote!!!

Hi all! Glad to see lots of new members of the SMARD group...awareness is key in battling SMARD! I wanted to let you all know about a chance to participate in a miracle. As you may know, the Gwendolyn Strong Foundation, a organization dedicated to curing…Read More

Pound Out SMA Fundraiser and Giveaway

Hi all!! Thanks so much again for joining our SMARD group! I wanted to let you all know about an embryonic stem cell program at UC Irvine that is getting ready to go into human trials with SMA type 1. Dr. Hans Keirstead, the leader of the project, has…Read More

Trophos Starts Phase Ib Clinical Trial Of TRO19622 In Spinal Muscular Atrophy

Spinal Muscular Atrophy Petition

Hello all, and thank you for joining the SMARD group!! We are stunned to see the support this group is getting, and I am thrilled to see so many people learning more about SMARD! I am writing to you today to ask for your help--as many of you know, Spinal…Read More

SMARD Testing in US

SMARD testing is now available in the United States through GeneDX in Maryland. It's about time.
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