Couldn't get to California this year for the FSMA Conference? Yearning for a more intimate gathering? Join us in Columbus, Ohio for an SMA Gathering!! We were planning the first Miracles & Madness SMA Gathering 2010!! Currently in the planning stages, we’re wondering what the interest level would be for a gathering beginning August 9th and continuing through the 12th. Currently in the works are an evening at the zoo, shopping and dinner in the Columbus area, and a meet and greet with some of the most prominent SMA researchers. We are hoping to get group rates established for at least one hotel and the zoo, so we need to know the interest level no later than July 30, 2010. Please e-mail me at mj.purk@gmail.com and let me know if you would be interested in joining us!
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Current Schedule:
Monday - Check into hotel, dinner, pool time and meet & greet with other families
Tuesday - Shopping trip to Tuttle Crossing and dinner with the researchers including Dr. Brian Kaspar, Dr. Arthur Burghes, and Dr. John Kissel
Wednesday - Free time until evening at the zoo and candle lighting
Thursday - Optional day: Some people will be traveling to KY for the Walk N Roll but you're welcome to stay in Columbus and see tourist attractions
Thursday, July 15, 2010
Friends in the Fight: Introduction & July's Feature
We, at Miracle for Madison & Friends, have decided to introduce a NEW feature to raise funds for the Gene Therapy Research that is occurring at The Ohio State University (OSU) and Nationwide Children's Hospital (NCH). We're going live tonight with a new section, entitled Friends in the Fight. This idea was inspired by the mother of our first Featured Friend, Danielle, mom to Karah! Danielle came to us with this idea to raise money for the Gene Therapy Research, in hopes of enabling researchers to continue focusing on pursuing a cure for SMA.
The purpose of Friends in the Fight is to feature one individual living with SMA, one individual who passed away from SMA, and one organization that is also actively supporting Gene Therapy Research in Ohio.
This month, July 2010, we are featuring the following individuals and group. Click on their name to learn more about how YOU can make a difference in a CURE for SMA!!!!
- Karah Barry - Featured Friend
- Emma Purk - Featured Angel
- Sophia's Cure - Featured Organization
Friday, July 2, 2010
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.co
MJ Purk
E-mail: mj.purk@gmail.com
Questionnaire: http://www.surveymonkey.co
Website: http://www.miracleformadis
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