This topic contains 5 replies, has 3 voices, and was last updated by  DeAnn R 2 months, 1 week ago.

  • Author
    Posts
  • #17062
     Victoria 
    Participant

    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

  • #17063
     Kevin Schaefer 
    Keymaster

    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.

  • #17064
     Victoria 
    Participant

    Thank you both so much I really appreciate it alot.

  • #17065
     Victoria 
    Participant

    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.

    • #17066
       Kevin Schaefer 
      Keymaster

      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.

  • #17133
     DeAnn R 
    Keymaster

    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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