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    Celebrating “Inchstones” in SMA

    A mother’s perspective: How our family measures progress since treatment

    You couldn’t picture a happier or more beautiful little boy than the one who came into our lives on January 4, 2019. Little did we know, this bundle of joy we named Slade was just starting a journey that was going to change our family’s life.

    About 2 weeks after Slade was born we started to notice that he appeared to be a bit floppy. Our pediatrician chalked it up to him being a calm baby and told us he’d eventually grow out of it. With my husband being a chiropractor and my background in early childhood development, we knew something was wrong–we could just feel it.

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      • Last Post
      • 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.
      • 822
      • 3,423
      • 1 day, 19 hours ago

        Robert Stump

      • 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
      • 6 months, 1 week ago

        DeAnn R

      • 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.
      • 25
      • 114
      • 1 month, 3 weeks ago

        Dennis Turner

      • 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.
      • 151
      • 388
      • 1 month ago

        Alyssa Silva

      • 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.
      • 128
      • 510
      • 3 weeks, 4 days ago

        Halsey Blocher

      • 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.
      • 112
      • 280
      • 1 week, 4 days ago

        DeAnn R

      • 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.
      • 125
      • 591
      • 1 week, 4 days ago

        DeAnn R

      • 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.
      • 37
      • 168
      • 1 month, 3 weeks ago

        Kevin Schaefer

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    FDA Approves ZOLGENSMA for SMA! Talk about it now — click below:

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