Have You Joined the SMA News Today Forums Yet?

Kevin Schaefer avatar

by Kevin Schaefer |

Share this article:

Share article via email

The SMA News Today forums section of this website https://smanewstoday.com/forums/ launched in January 2018, and it now has close to 300 members. This platform exists so that people in the SMA community can connect with each other, ask questions, and share experiences.

Below is a list of the different subforums we currently have.

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.”

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​ also ​a​ ​place​ ​for​ ​veteran​ ​parents​ ​to help​ ​out​ ​the​ ​younger​ ​ones​ ​with​ ​newly​ ​diagnosed​ ​kids.”

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.”

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. All adults with SMA are welcome to join.”

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.”

SMA and Dating/Relationships: “This​ ​is​ ​a​ ​forum​ ​for​ ​individuals with SMA to​ ​discuss​ ​dating, relationships​, and marriage.”

Polls & Quizzes: “Take part in a wide range of polls, surveys & quizzes pertaining to SMA.”

SMA Forums Welcome Lounge: “New to the forums? 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!”

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, Michael Morale, and Ryan Berhar share their perspectives as individuals with SMA. In these videos, they discuss their daily lives, how SMA affects them, and the latest news on SMA research and treatments.”

Going To College When You Have SMA: “Whether​ ​people​ ​commute​ ​from​ ​home​ ​or​ ​go​ ​to​ ​a university​ ​states​ ​away​ ​from​ ​where​ ​their​ ​parents​ ​live,​ ​this​ ​is​ ​a​ ​place​ ​for​ ​college students​ ​with SMA to​ ​share​ ​tips​ ​and​ ​ask​ ​each​ ​other​ ​questions.”

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.”

Spinraza: “We​ ​will ​add​ ​forums​ ​for​ ​other​ ​treatments and drugs​ ​in​ ​clinical​ ​trials​ ​later​ ​on,​ ​but for​ ​now​, we’ll​ ​keep​ ​the​ ​focus​ ​on​ ​Spinraza.​ ​This​ ​is a​ ​great​ ​place​ ​for​ ​anyone​ ​to​ ​ask questions​ ​about​ ​the​ ​treatment​ ​and​ ​share​ ​experiences.”

Registering for the SMA Forums

Registering for these forums is simple. You can either login through Facebook, or create an account on the main page here https://smanewstoday.com/forums/. Once you sign up, you will be asked to fill out some basic information about yourself, such as where you live and whether you are someone with SMA or a parent/caregiver. Medical professionals are also welcome to join. You also have the option of writing a short, 300-word biography to tell a little more about yourself.

From there, you are welcome to join in on the many conversations we currently have going on, or to create new discussion topics. These are public forums, so all of your posts will be visible. However, there is a direct message feature, which allows you to contact other members privately.

Forum moderators Kevin Schaefer, DeAnn Runge, and Ryan Berhar would love for you to be a part of this online community, and to make your voice heard.