SMA News Forums

This forum is for discussing the Coronavirus (COVID-19) pandemic, and how it coincides with SMA. Feel free to ask questions, share tips for staying healthy, etc.

New to the forum? Be sure to introduce yourself here. It's the perfect place to talk a bit about yourself and your SMA journey, as well as get to know our community of individuals with SMA and parents and caregivers whose loved ones have the disease. We look forward to getting to know you!

31 Days of SMA is a social media campaign that coincides with SMA awareness month. Every day in August, we will feature a story from someone in the SMA community. You can follow the stories here.

This​ ​forum​ ​is​ ​a​ ​place​ ​for​ ​SMA​ ​parents and​ ​caregivers​ ​to​ ​talk​ ​with​ ​each​ ​other,​ ​share​ ​tips,​ ​ask​ ​each​ ​other​ ​questions,​ ​etc.​ ​This​ ​is​ ​a​ ​place​ ​for​ ​veteran​ ​parents​ ​to help​ ​out​ ​the​ ​younger​ ​ones​ ​with​ ​newly​ ​diagnosed​ ​kids.

This forum is for discussing Roche and Genentech's oral therapy Evrysdi (formerly known as risdiplam). The FDA approved this treatment for all SMA types on August 7, 2020.

This forum is for discussing information, questions and experiences regarding Spinraza (Nusinersen). Spinraza is developed by Biogen pharmaceuticals, and it became the first FDA-approved treatment for SMA in 2016.

This forum is for discussing news and information regarding the drug Zolgensma. Previously knowns as AVXS-101, Zolgensma is the proprietary gene therapy candidate from AveXis designed to treat spinal muscular atrophy (SMA).

This forum contains links and videos to all content on the SMA News Today YouTube channel. Videographers DeAnn Runge and Michael Morale share their perspectives as SMA patients. In these videos they discuss their daily lives, how SMA affects them and the latest news on SMA research and treatments.

This forum is for discussions about disability portrayal in books, movies, tv shows, music and other forms of media. We will discuss books like the popular memoir “Laughing at my Nightmare” by Shane Burcaw, an author who has SMA. The idea is to explore how disability is portrayed in mainstream media, and to look for content written and produced by people with disabilities. Suggestions are always welcome.

Take part in a wide range of polls, surveys & quizzes pertaining to SMA..

This group shares and reacts to news and research related to approved and emerging SMA treatments and therapies. If you find a news article about SMA R&D, feel free to post it here or react to other people's posts.