- 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 week, 4 days 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.
- 6 days, 22 hours 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!
- 10 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, 1 week ago
Flash Briefings and Podcasts
This forum is for posting our Amazon Alexa flash briefings, and our podcasts. Listen here, and give us feedback!
- 1 month, 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.
- 2 months, 1 week ago
Roche and Genentech-risdiplam
This forum is for discussing Roche and Genentech's therapy risdiplam. Currently this drug is still in clinical trials. We will continually update this page.
- 2 weeks, 2 days ago
We will add forums for other treatments/drugs in clinical trials later on, but for now, we'll keep the focus on Spinraza. This will be a great place for anyone to ask questions about the treatment and share experiences.
- 1 week, 5 days 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).
- 5 months, 2 weeks 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.
- 3 weeks, 1 day 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.
- 3 months 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.
- 1 week 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.
- 2 months, 1 week ago
SMA and Dating/Relationships
This is a forum for SMA individuals to discuss dating, relationships and, marriage.
- 4 months, 2 weeks ago
Polls & Quizzes
Take part in a wide range of polls, surveys & quizzes pertaining to SMA..
- 4 months, 4 weeks 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.
- 5 months ago
- Coronavirus (COVID-19) and SMA