• Sponsored Post

    Adapting to Life Outside Our Home With SMA

    I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

    I spend much of my time pre-planning and thinking of possible problems that we may run into because of the kids’ diagnoses. I think many other SMA parents do this as well. Prior to our lives with SMA, we didn’t realize just how inaccessible the world is to those who are differently-abled.

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      • 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.
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      • 72
      • 1 week, 5 days ago

         Kevin Schaefer

      • 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.
      • 131
      • 326
      • 2 hours, 48 minutes ago

         Alyssa Silva

      • 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.
      • 27
      • 137
      • 1 week, 6 days ago

         DeAnn R

      • 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!
      • 23
      • 116
      • 1 month, 3 weeks ago

         DeAnn R

      • 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.
      • 96
      • 238
      • 4 days, 1 hour ago

         Alyssa Silva

      • 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
      • 113
      • 527
      • 3 weeks, 4 days ago

         Crystal

      • Spinraza
        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.
      • 122
      • 485
      • 1 week, 3 days ago

         Alyssa Silva


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