SAVE THE DATE - National Ataxia Foundation Cleveland Support Group Announces Northeast Ohio Walk n’ Roll to Cure Ataxia On August 14, 2016

National Ataxia Foundation Cleveland Support Group Announces Northeast Ohio Walk n’ Roll to Cure Ataxia On August 14, 2016

The National Ataxia Foundation Cleveland support group is organizing the first annual Northeast Ohio Walk n’ Roll to Cure Ataxia on August 14, 2016 from 10 a.m. to 2 p.m. at the Keystone Pavilion of the Cleveland Metroparks, West Creek Reservation. 


Save the Date please.
Where: Keystone Pavilion of the Cleveland Metroparks, West Creek Reservation. 

When: August 14, 2016

For more information about the national Walk n’ Roll events visit the NAF’s Walk n’ Roll webpage at http://www.ataxia.org/events/walk_n_roll.aspx.

We will need walk participants, event sponsors, event day volunteers and more.

More information will be available soon.

If you would like to be involved or have any questions please contact Mike Hammer at mikey.hammer@gmail.com.

Social get together April 14

Our next get together will be on Thursday April 14th at Carrabas Restaurant 5030 Tiedemann Rd Brooklyn, OH at 6:30 p.m.. See you then!

Live Webcast from the National Ataxia Foundation conference - Sunday April 3

Website Contact Resources Research Links Please share this email with others using the "Forward this email" button found at the bottom of this notice.   http://www.ustream.tv/channel/sXJXK4asHL2  Name | Company | Phone | Ema l | We To ensure that you continue to receive our emails, please add naf-eblast@ataxia.org  to your address book.

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/releases/2016/03/prweb13246650.htm.

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.biomedcentral.com.

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.

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

August meeting

Reserve Monday,8/31 for our next meeting at 6:30 pm at the Garfield Heights library right off I-480 and Turney Road

 - Carmen

Bahama Breeze meetup and more info

We have a social gathering planned for Wednesday May 20 at the Bahama Breeze restaurant off Chagrin Blvd.at 6:30 pm
The event is open to all group members and anyone interested in Ataxia and our group, please e-mail Carmen at willowpier@roadrunner.com if you plan to attend, with the number in your party.


The next formal meeting, Tuesday June 16 at the Warrensville library, at 6:30  there will likely be a medical representative from UH at the meeting


Best,
Carmen