- Last Post
Coronavirus (COVID-19) and SMA
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.
- 1 month, 3 weeks ago
Adults With SMA
This forum is for adults who have SMA to connect, ask questions and share experiences. Discussion topics here range from independent living to managing work and social lives. Adults with SMA are welcome to join.
- 1 hour, 36 minutes ago
SMA Forums Welcome Lounge
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!
- 2 months ago
Diagnosis Information and General Questions
This forum is designed for newly diagnosed patients and parents/caregivers who are looking for information about where to start in their SMA journey. Here is where people can ask basic questions about SMA and sort of help each other through the initial diagnosis stage.
- 5 months, 2 weeks ago
31 Days of SMA
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.
- 1 year ago
Flash Briefings and Podcasts
This forum is for posting our Amazon Alexa flash briefings, and our podcasts. Listen here, and give us feedback!
- 11 months, 2 weeks ago
SMA Parents and Caregivers
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.
- 10 months, 4 weeks ago
SMA Treatments: Questions, Stories, etc.
This is a forum for general questions and stories regarding SMA treatments. Here, you can discuss FDA-approved therapies, as well as ask questions about drugs that are still in development.
- 3 months, 2 weeks ago
Roche and Genentech- Evrysdi (risdiplam)
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.
- 9 months, 2 weeks ago
This is a space to share weekly highlights and generally positive things. What’s something good that happened to you this week? We all need a little motivation and a space to lift each other up. Feel free to share anytime.
- 7 months ago
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.
- 6 months, 1 week ago
Would You Rather?
In this forum, we’ll post "would you rather" topics. The idea is to have fun questions where you have to choose between two hypothetical situations. Some of these will be SMA-related and others won’t. Hope you enjoy it!
- 3 months, 4 weeks ago
Zolgensma (AVXS-101) News and Information
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).
- 2 years, 8 months ago
Raising Awareness of SMA
This is a forum for individuals to share ideas to help raise awareness of SMA or initiatives that they feel warrant the community's support.
- 2 months, 2 weeks ago
The SMA News Today YouTube Channel
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.
- 2 weeks, 4 days ago
SMA Assistive Technology/Equipment
This forum is for sharing information about tools and technologies that can benefit people with SMA. Between Amazon Alexa devices, adaptive equipment for wheelchairs and other tools designed to assist SMA individuals in their daily lives, there are new technologies being developed every day. This is a platform to ask questions and share information about these devices.
- 2 weeks, 4 days ago
Disability in Media
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.
- 1 week ago
SMA and Dating/Relationships
This is a forum for SMA individuals to discuss dating, relationships and, marriage.
- 5 months, 1 week ago
Polls & Quizzes
Take part in a wide range of polls, surveys & quizzes pertaining to SMA..
- 1 year, 3 months ago
Going To College When You Have SMA
Whether people commute from home or live on campus, this is a forum for college students with SMA to share tips and ask each other questions.
- 1 year, 3 months ago
- Coronavirus (COVID-19) and SMA