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Welcome to the SMA1 Community. Here you will find other families with dealing SMA1. Please connect, support and inspire each other.

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    Latest Members

      • Tacoma_MDA_Office

      • Jrfirefighter

      • beppo123

      • wheelyboy

      • riksmomdad

      • MDA_HealthCareSvcDept

      • helen

      • unktom

      • Miershpedankl

      • MDA_Advocacy_Office

      • TintonFalls_MDA_Office

      • Jennifer_JakesMommy

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    Comments




    • Hello everyone today I read that tylenol is having a recall. I just wanted to let you know in case you didn't already know.
      riksmomdad, 6 months ago| Flag
    • MDA is looking for feedback... what did you think of the "SMA In Focus" special insert in the April-June 2009 Quest Magazine? If you didn't have a chance to see it, it can be found here - http://www.mda.org/publications/quest/q162SMA-in-focus.html. Please send us a private message us to let us know your thoughts...
      MDA_HealthCareSvcDept, 7 months ago| Flag
    • FED GOVT HELP AVAILABLE FOR YOU
      Have you ever checked into programs and assistance the Federal Government has to offer? I was surprised by the statistics which show how few people take advantage of what is available. The following is an overview of programs and help. I hope it proves useful to you.
      The U.S. Department of Labor today launched Disability.gov, a redesigned federal Web site that connects the more than 50 million Americans with disabilities to thousands of trusted resources on disability-related issues, programs and services. Formerly known as DisabilityInfo.gov, the site has been completely redesigned and updated with new social media tools, such as a blog and a Twitter feed, to encourage feedback and interaction among visitors.
      Disability.gov is not just for Americans with disabilities, but also for parents of children with disabilities, employers, workforce and human resource professionals, veterans, educators, caregivers and many others. Disability.gov features comprehensive information from 22 federal agencies, as well as educational institutions, non-profit organizations and state and local governments. Topics covered on the site include: benefits; civil rights; community life; education; emergency preparedness; employment; health; housing; technology; and transportation. If you have time, after visiting the website, please stop by my page to say hello and give your thoughts on the site.
      The best to everyone UnkTom
      This is the website address http://www.disability.gov/
      unktom, 7 months ago| Flag
    • Hi
      I am looking for information on drugs or treatments any of you may have been treated with for respiratory problems or infections while on a vent.
      Thank you for any help you may provide. Helen
      helen, 8 months ago| Flag
    • UNK TOM SPEAKS TO PRESIDENT OBAMA - - - - My skype phone rings, it’s an advocacy group I work with requesting me to prepare a few minute speech on living at home with severe disabilities which will be recorded for distribution via DVD. Ok, I will do it. What should I wear I ask? Casual and comfortable with a big smile was the order, I can do that. Oops, I forgot to ask who will view my speech.
      Ok, it’s the day of the shoot and I have my best baggy shorts on, my wildest Hawaiian shirt, my Crab Shack hat and my designer shades. I am ready! The camera man arrives with the director and I notice snickering. Oops, did I forget a zipper, are my Nikes on the wrong foot? Couldn’t be that simple, the director informs me this speech is being delivered to President Obama and members of Congress and my comfortable attire may be too casual for the occasion.
      Here we go, a full wardrobe change two minutes into the shoot, just my luck, is this what actors go through? Ok, I am ready. I have my best dress shirt and pants on. I hope the President appreciates my clothing effort. The shoot completes without a hitch and I rush to get back into casual clothing.
      My speech will be for the benefit of the Community Choice Act. The Community Choice Act is a bill which can affect millions of individuals with disabilities to have a choice between receiving care at home or in an institution. I hope my small effort in someway helps this bill get through Congress and on the President’s desk for his signature.
      I really think my Hawaiian shirt, baggy shorts, crab shack hat and designer shades would have made a smashing impression.
      unktom, 8 months ago| Flag

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