NAF Cleveland area support group Newsletter, 1

HELLO From CARMEN

Welcome to the first issue of the National Ataxia Foundation, Cleveland area support group newsletter. The plan is to release a newsletter quarterly – Winter, Spring, Summer and Fall – and make it available in print at the regular meetings of our group and electronically, via e-mail distribution and the support group website.

In thinking about this article, I pondered many things. Let me thank Mike for helping put this together and everyone who has been involved with our support group for making the group, meetings, social outings, discussions and more happen. The National Ataxia Foundation (NAF) Cleveland area support formed 2-3 years ago, I planned some meetings through the NAF at a few Cuyahoga County libraries and it went from there. Frankly, we are still developing an identity. What can we do to best support the folks with Ataxia, their caregivers, & family & friends? - Our group has grown since its inception and even staged the first Northeast Ohio Walk n’ Roll to Cure Ataxia (more about that later). But back to the newsletter, the primary reason for it is to keep you up to date on the events and happenings of the local support group. The newsletter and our blog should keep you current on past and future events. The second reason for the newsletter is to build momentum for the 2017 Northeast Ohio Walk n’ Roll to Cure Ataxia. While we lack some specifics about the first Walk n’ Roll to Cure Ataxia, as the 2016 event was just completed, it is never too early to begin thinking about next year’s event.

Let us talk about the 2016 NEO Walk n’ Roll to Cure Ataxia. It is important to thank everyone who worked on it, especially Susan Kresnye and her team. We had no experience staging a Walk n’ Roll to Cure Ataxia, so everything for us was a first. The goals of the event are to build community awareness of the disease and to raise research funds. Community awareness is still our biggest challenge. Most people have not even heard of Ataxia. The event was not perfect, however the results far exceeded our expectations.  We estimate over 100 folks participated and we raised approximately $13,000 (our goal was $10,000) for the NAF and Ataxia research. This is a solid foundation on which we can build.

This is for the benefit of all of us and our families. While there at least 32 forms Ataxia (that we know of) there is a potential relationship with MS, Parkinson’s and Lou Gehrig’s diseases. While Ataxia is classified as a low profile disease and therefore research dollars are limited, the other related diseases are classified as high profile with extensive research and clinical trials happening.  In summary, there is much going on in all of these areas. A cure for one may mean treatments for related diseases. You get the picture. Sitting on the sideline and letting others do the heavy lifting is unfair to you. Keep in mind WE ALL BENEFIT from your participation as we are in a race for time (Ataxia is frequently hereditary, so a cure not only affects us but may help our off-springs). We need to support and educate each other. I hope and pray we are closer to a cure than ever.

We need all hands on deck, ESPECIALLY YOU. DO IT FOR YOU. Thanks again, Carmen  Carmen Pieragastini: Cleveland area support group Ambassador for the National Ataxia Foundation willowpier@roadrunner.com        

         
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Let us know:

Should we do group Facebook page? Open to the public? Should we do year round NEO Walk n’ Roll Facebook page? Should we contact local colleges, medical departments for volunteers? Is anyone interested in coordinating volunteers and partnerships?
Should we have meetings at different places? Suggestions? Should we plan a fundraiser night? Where?  Does anyone know of a local doctor to go to? What are you looking for the group to do?

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Thank you to everyone who attended and participated in the 2016 Northeast Ohio Walk n’ Roll to Cure Ataxia. We are planning another walk in 2017 so if you have any suggestions or feedback from the 2016 event please e-mail Carmen or post your suggestions in our group blog or in an e-mail to everyone

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Find more Ataxia info at  ataxia.org  - twitter.com/NAF_Ataxia - www.youtube.com/user/NatlAtaxiaFound -  www.facebook.com/ataxiafoundation

October Meeting

Our next meeting is Tuesday, October 4, 2016 at the Garfield Hts branch of the Cleveland Public Library at 6:30. Guest speaker will be Kevin Pank of Sagemark Consulting to discuss long term financial planning. All are welcome.