Wednesday, September 2, 2020

National Ataxia Foundation Virtual Walk n’ Roll to Cure Ataxia fundraiser


Please help raise awareness for Ataxia by joining the National Ataxia Foundation Virtual Walk n’ Roll to Cure Ataxia fundraiser on Oct. 3, 2020. Register today by going to www.ataxia.org/WalkNEO.
This virtual fundraiser will help us find treatments and a cure for Ataxia. Join us online beginning at 1 p.m. (est) online Oct. 3rd for the Virtual Walk n’ Roll to Cure Ataxia, or simply help support Ataxia Awareness and donate by visiting www.ataxia.org/WalkNEO today.
Thank you.

Thursday, August 13, 2020

The 2020 National Ataxia Foundation Virtual Walk n' Roll to Cure Ataxia on Oct. 3rd is gearing up

 The 2020 National Ataxia Foundation Virtual Walk n' Roll to Cure Ataxia on Oct. 3rd is gearing up. JOIN US.

Register here - https://naflive.com/registration/all-access-196


Monday, July 27, 2020

Free Brain & Life magazine

https://www.facebook.com/BrainandLifeMag/
i got an email today from Brain & Life magazine, it is a neurological magazine that I get email updates from and read online, It is published a few times a year. The sent out an email about getting a free subscription. Brain & Life has a Facebook page if anybosy wants to look it up and read the description and get a copy, just thought I would p[ass the info along.
This is want is says on the Brain & Life Facebook page -
Brain & Life is an award-winning magazine for neurology patients and their caregivers. It is a free public service of the American Academy of Neurology. To register for a free subscription, visit http://www.brainandlife.org



Sunday, July 19, 2020

Zoom meeting invitation - Northeast Ohio Ataxia Support Group

Zoom meeting invitation - Northeast Ohio Ataxia Support Group

Topic: Northeast Ohio Ataxia Support Group Time: Jul 27, 2020 04:00 PM Eastern Time (US and Canada)

Join Zoom Meeting https://us04web.zoom.us/j/72727335026?pwd=OVNHbkU4OVZPQjk0dW1GWkdLaElOQT09 Meeting ID: 727 2733 5026 Passcode: 1zLaE2

Thursday, July 9, 2020

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


Sunday, June 7, 2020

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


Wednesday, May 6, 2020

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).