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Website for the National Ataxia Foundation Northeast Ohio area support group
Thursday, March 31, 2016
Live Webcast from the National Ataxia Foundation conference - Sunday April 3
Monday, March 28, 2016
March 12 meeting minutes
Here are the minutes from our meeting on Saturday:
Guest speaker Terry Johnson from A & A Medical Supply brought a U-Step walking stabilizer for us to try. It is specifically designed for individuals with walking/gait issues or that have use of only one hand. It works the opposite of a standard walker in that you use the hand brake to walk and release it to stop. It's designed with a lower center of gravity and wraps around (like a "u") to provide more stability. You can go to www.ustep.com for more information. Terry also talked about Medicare and how it applies to purchasing needed equipment (walkers, scooters, power chairs, etc.)
Guest speaker Jill Cunnington, occupational therapist for CareTenders, had great information regarding the challenges we all face on a daily basis. She was my in-home tharapist while I was recovering from my broken ankles and has helped make me stronger and safer in my home.
Don Tredent emailed us information regarding a new drug and trials that will begin in the fall from a company called Biohaven. You can read about it on their website: https://www.prweb.com/
There is also a Cerebellum and Ataxia Journal from Biomed Central which is an open access journal devoted to cerebellar research and disorders including scientific reports and clinical cases of numerous forms of ataxia. Search:cerebellumandataxias.
Sue Kresnye and Jeff Mossbruger (new member) will be attending the NAF conference in Orlando, FL April 1-3 and will have much info to share when they return.
Guest speaker Terry Johnson from A & A Medical Supply brought a U-Step walking stabilizer for us to try. It is specifically designed for individuals with walking/gait issues or that have use of only one hand. It works the opposite of a standard walker in that you use the hand brake to walk and release it to stop. It's designed with a lower center of gravity and wraps around (like a "u") to provide more stability. You can go to www.ustep.com for more information. Terry also talked about Medicare and how it applies to purchasing needed equipment (walkers, scooters, power chairs, etc.)
Guest speaker Jill Cunnington, occupational therapist for CareTenders, had great information regarding the challenges we all face on a daily basis. She was my in-home tharapist while I was recovering from my broken ankles and has helped make me stronger and safer in my home.
Don Tredent emailed us information regarding a new drug and trials that will begin in the fall from a company called Biohaven. You can read about it on their website: https://www.prweb.com/
There is also a Cerebellum and Ataxia Journal from Biomed Central which is an open access journal devoted to cerebellar research and disorders including scientific reports and clinical cases of numerous forms of ataxia. Search:cerebellumandataxias.
Sue Kresnye and Jeff Mossbruger (new member) will be attending the NAF conference in Orlando, FL April 1-3 and will have much info to share when they return.
Friday, March 11, 2016
March meeting - Saturday March 12th
Hello All:
We are so excited to be getting together for our first support group meeting of 2016 this Saturday March 12th at the Garfield Hts library. We have lots of catching up to do and some really exciting news to share for the coming year.
We will have two guests: Terry Johnson from A&A Medical Supply demonstrating a new U-Step walker. I had an opportunity to use this during one of my therapy sessions. You will be impressed! It has many features specific to individuals with gait issues. Also Jill Hunnington, an occupational therapist, will be sharing her information and insights.
It will be great to see everyone again. Hope you can join us!
Carmen and Ginger Pieragastini
We are so excited to be getting together for our first support group meeting of 2016 this Saturday March 12th at the Garfield Hts library. We have lots of catching up to do and some really exciting news to share for the coming year.
We will have two guests: Terry Johnson from A&A Medical Supply demonstrating a new U-Step walker. I had an opportunity to use this during one of my therapy sessions. You will be impressed! It has many features specific to individuals with gait issues. Also Jill Hunnington, an occupational therapist, will be sharing her information and insights.
It will be great to see everyone again. Hope you can join us!
Carmen and Ginger Pieragastini
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