Help Researchers by Filling Out a Simple Questionnaire

If you or someone you know has SMA, Please take a few minutes to help researchers better understand how the Autonomic Nervous System is affected by SMA.

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Hello Everyone:
My name is MJ and I am a senior in college currently interning with Miracle for Madison and Friends. Miracle for Madison and Friends is an organization dedicated to finding a cure for Spinal Muscular Atrophy by supporting the efforts of researchers at the Ohio State University and Nationwide Children’s Hospital. As part of my internship work, I am conducting a questionnaire about autonomic nervous system problems related to SMA in children and adults with all types, including those who have earned their wings. This questionnaire is sponsored by Miracle for Madison and Friends but is not associated with any university, medical professional, or additional organizations It is currently undocumented whether or not individuals with SMA have autonomic nervous system dysfunctions and this questionnaire, although not scientifically based, will enable the medical profession to see what autonomic symptoms are most prevalent in individuals diagnosed with SMA. The questionnaire is ten (10) questions in length and should take no more than thirty (30) minutes to complete if you include additional information about your own or your child(ren)’s symptoms. If you have/had more than one child with SMA, please fill out the questionnaire for each of your children that you can recall in depth medical details about. The questionnaire will be available until August 8th 2010, but the sooner you can answer the questions, the better. At the end of questionnaire, I will compile the data and share it. There is a question asking for your e-mail address; please include your e-mail address if you wish to have the results e-mailed to you. Questions regarding this questionnaire can be directed to mj.purk@gmail.com. Again, results are *NOT* scientifically based but information gathered will be shared with several organizations, community support groups, and some medical professionals who have publicly expressed an interest in this topic, once the questionnaire is completed.

You can find the questionnaire at http://www.surveymonkey.com/s/HQLW7XK

MJ Purk
E-mail: mj.purk@gmail.com
Questionnaire: http://www.surveymonkey.com/s/HQLW7XK
Website: http://www.miracleformadison.org/