Join the 2020 Northeast Ohio Walk n' Roll to Cure Ataxia starting today

Sign up for the Northeast Ohio Walk n' Roll the Core Atatia today. Start your own team or join someone elses. Get prepared to find a place to do your virtual walk and sign up to donate some money to defeat Ataxia today. Sign up at www.ataxia.org/WalkNEO National Ataxia Foundation is planning a virtual Walk n' Roll to Cure Ataxia for everyone across the country, for everyone to visit the same webpage in October for a virtual event.

Details and ideas to help promoting the virtual event and help gather donations and donate to the National Ataxia Foundation will be posted in the future. So stay tuned. For now please visit www.ataxia.org/WalkNEO

2020 NEO Walk n' Roll to Cure Ataxia

Hello NEO Walk n’ Roll to Cure Ataxia supporters,

We have exciting news for the 2020 Walk n’ Roll to Cure Ataxias, the National Ataxia Foundation will be hosting an online virtual Walk n’ Roll to Cure Ataxia online this year. The date being targetted is Oct. 3 for about 90 minutes and the NEO support group will take part. Supporters will be able to win raffle items and donate money.

Because NAF and all of us event organizers across the country are unsure about the ability to have a mass gathering event, the Walk n’ Roll to Cure Ataxia events will all be combined into one and streamed online this year. We will all be able to visit a website and watch speakers from the Ataxia community and participants from all over the country, and donate via credit card or debit card, etc. by clicking on a button on the website.

The NEO support group may have our own online streaming event after the online virtual Walk n' Roll from NAF or we may do something else. Anyone who has ideas or would like to be involved in planning please contact us, we will let you know when all specifics are finalized.

Thanks

question from Florida group

A member in a Florida Ataxia support group asked if anyone was familiar with these people or doctors at the Cleveland Clinic.
If anyone knows something about them please contact me
- mike

My uncle was Roderick O. Jones, MD.

When he took his brother Sumner R Jones to the Cleveland Clinic for "the family curse," he was seen by James S. Hewlett, MD.

In 1962, "Dr. Wallace of our Department of Neurology made a diagnosis of heredito-familial cerebellar degeneration."

That must be what they called SCA6 and all ataxias back then.

The other doctors mentioned in the report were Tingwald (hearing), VanOrdstrand (pulmonary).

NorthEast Ohio Ataxia Support Group, March 2 call followup

Hello all,

 Hope everyone is staying warm, Anyone got any summer plans already? 

On march 2nd, We had a group meeting via conference call.. we discussed everything from the NAF Ataxia Conference being cancelled to some really cool places to have a group outing at including the Cleveland Metroparks for the adaptive kayaking etc we learned about at last year's walk n roll... If you guys are interested in doing that with me let me know n we will make it happen.

We also discussed taking a year off of the walk n roll BUT still having our yearly Ataxia  get-together at a park and maybe doing a potluck etc... We will set a date for our get together and we still want to see all our Ataxia friends and family this summer!!!  Any ideas are welcome! Please contact me or Ginger or Mike if you have any suggestions.

I hope to see you all soon and due to this coronavirus maybe we can all get together for an conference call again if an outing isn't the best of ideas.

Please let me know if you have any questions or need suggestions/information on any handicapped services you need help with.

Julie Clarich

julieplus3@gmail.com

440-666-6078

group phone call March 2 at 6 pm

We have a group phone call planned March 2 at 6 pm
Dial-in number: (425) 436-6375
Access code: 238411

if you have any questions email
Julie Clarich at julieplus3@gmail.com
or
Mike Hammer at mikey.hammer@gmail.com

March 2 conference call for members

Hey all,


We are planning a conference call for members on March 2nd at 6 pm.

Keep a look out for upcoming information on the conference call phone number and the passcode to join the call. We will discuss upcoming events, educational information and more.

Mark your calendars for March 2nd at 6 pm and keep your eye out for all the details for the conference call.

Feb. 3rd social meeting

Dear Ataxia friends,

Hope all of you had a Merry Christmas and a Happy New Year!! We miss seeing you all and getting together.. We are hoping to see everyone at any/all social get togethers and monthly meetings in alternating months.

So you guys can mark it on your calendars and plan attending, I send out to everyone a monthly get together and social event calendar..

For starters, Let's get together beginning in February for a social gathering and get out of the house and enjoy some dinner or just dessert!

WHEN: Monday February 3rd 2020 

WHERE: Outback Steakhouses in Rockside rd.

TIME:  6:00pm

(Anyone want to spit a blooming onion?)

This will get us started and after this I hope others will suggest a  place theyd like to meet. Musuems. Arcade. Movies Nights etc...

I hope to see you there.. let me know if you are attending so I can plan accordingly. Last minute people are always welcome to come!

I think we could all use a friendly face and to share stories and ideas that make living with this thing called Ataxia easier

Feel free to bring loved ones/caregivers, family members or friends to any social get togethers!

Any questions let me know...

- Julie Clarich

  julieplus3@gmail.com