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  • Raising awareness of sma type 0

    Posted by victoria on February 6, 2019 at 12:25 pm

    I would like to raise better awareness and gain better knowledge of sma type 0. My son was born with sma type 0, and I have been trying to reach out/branch out to other families or caregivers to find out about there experience with type 0. I have learned alot about it but there aren’t many studies done on type 0. If you have any advice or information I would greatly appreciate it.  Thank you all and god bless

    deann-r replied 5 years, 4 months ago 3 Members · 5 Replies
  • 5 Replies
  • kevin-schaefer

    Member
    February 6, 2019 at 12:29 pm

    Victoria, thank you for bringing this topic to our attention. It really doesn’t get talked about in the SMA community, and this is something we want to fix. Michael and I are already having conversations about doing research on this, and we will keep you updated. Thanks again.

  • victoria

    Member
    February 6, 2019 at 12:32 pm

    Thank you both so much I really appreciate it alot.

  • victoria

    Member
    February 6, 2019 at 12:36 pm

    If you guys know of any websites I can go to and read about on that would be awesome to.  I am already a part of cure sma and they have been a huge help.

    • kevin-schaefer

      Member
      February 6, 2019 at 12:40 pm

      Us and Cure SMA are the top sources for SMA information. Are you going to try to go the Cure SMA conference this summer? I’ll be there.

  • deann-r

    Member
    February 10, 2019 at 6:23 pm

    As with many, I am unfamiliar with type 0. May I ask what led to the type 0 diagnosis? I myself am type 2 as I’ve never walked. Typically type is determined by age of diagnosis and milestones reached. Although I know types and knowledge of types is important, I believe what is most important is unconditional love and acceptance. Did you have any specific questions? Even though types differ many of us can give insight on SMA issues.

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