Tuesday, May 29, 2018

Meeting: June 13th, 6:30 p.m. (est)- TELECONFERENCE MEETING ABOUT NAF CONFERENCE AND 2018 WALK N' ROLL



It has been a while since we touched base and we have SO MUCH to share with you about the NAF conference in Philadelphia and preparations for the upcoming walk.
We also have been thinking about an easier, better way to keep in touch, knowing how difficult it is for everyone to physically attend our meetings. We are very excited to announce that we will begin using TELECONFERENCE MEETINGS through  http://www.freeteleconference.com   with our first call on Wednesday, June 13th at 6:30 p.m. (est)

An email invite with call-in instructions for the meeting will be sent to all the NAF Northeast Ohio Support Group members and friends. Keep an eye on your e-mails.
We hope everyone can join the meeting phone call to hear about the conference and plans that are underway for the upcoming NEO Ealk n' Roll to Cure Ataxia.

Monthly teleconference meetings are planned in the future on the second Wednesday of each month.

If you have any further questions you can e-mail mikey.hammer@gmail.com.

Friday, March 30, 2018

2018 Annual Ataxia Conference will be streaming live on Facebook Live

We're Going Facebook Live!
We're excited to announce that we will be streaming the 2018 Annual Ataxia Conference sessions LIVE on Facebook! All you have to do is check out the NAF Facebook page to join in. "Like" our page if you haven't already - then tune in during the times below:

Thursday, April 5th - 9am-12:20pm
Friday, April 6th - 9am-12:00pm
General Session Schedule:
Welcome & Announcements
Thursday, April 5 @ 9am

Trigriluzole: A Phase 2/3 Randomized Controlled Trial in Patients with Spinocerebellar Ataxia
Thursday, April 5 @ 9:15am

NAF Update
Thursday, April 5 @ 9:35am

Living with Ataxia
Thursday, April 5 @ 10:05am

Barriers to Exercise
Thursday, April 5 @ 10:50am

10 Basic Steps for Special Needs Caregivers
Thursday, April 5 @ 11:20am

Clinical vs. Basic Science Research
Thursday, April 5 @ 11:50am

FRDA and other childhood Ataxias
Friday, April 6 @ 9am

Genetic Testing - You need to get tested: Here's why
Friday, April 6 @ 9:30am

Ataxia Investigators Meeting (AIM) Highlights
Friday, April 6 @ 10:00am

Management of Ataxia
Friday, April 6 @ 10:30am

Home Safety Based Modifications
Friday, April 6 @ 11:20am

Check out speaker photos and bios and see instructions for joining the Facebook Live broadcast at the link below.

Sunday, March 11, 2018

Group Get Together March 20, 2018


Hello everyone, 
i hope you are all doing well. I figured it was about time to get out off the house and get together! How about RED ROBIN on ROCKSIDE RD.!!! On MARCH 20, 2018 at 630pm.
Everyone is welcome to attend and bring a friend.

Carmen and Ginger will be heading off to the Ataxia Conference in April and any questions or information you would like them to to find out answers to please bring it along with you to the get together.

Hope to see everyone there

- Julie Clarich

Friday, October 13, 2017

October 24 Meeting - Potluck at Julie's House


Hello Everyone 

  You are all invited to join the Ataxia Support Group for a Potluck dinner for all
We will meet at my home in North Olmsted on Tuesday October 24th at 6pm..
Please email or text if you are attending for directions.
We will be having a spaghetti dinner. Please bring a side or dessert to share.
I will have water, soda and ice tea...

Hope to see you for dinner.

Julie
E-mail: julieplus3@gmail.com
Phone: 440.666.6078

Thursday, September 14, 2017

IAAD meeting at Bahama Breeze in Beachwood


REMEMBER:
We Look forward to any and all who can join us on September 25 at 6:30pm at Bahama Breeze in Beachwood - http://www.bahamabreeze.com/locations/oh/beachwood/cleveland-orange-village/3034 - to Celebrate International Ataxia Awareness Day. If attending please RSVP to me - julieplus3@gmail.com or 440-666-6078 - so i reserve enough tables.

Julie
Julie Clarich
E-mail: julieplus3@gmail.com
Phone: 440-666-6078

Tuesday, September 12, 2017

NEO Walk n' Roll to Cure Ataxia a success, IAAD meeting planned Sept. 25

2017 NEO Walk n’ Roll to Cure Ataxia Raises More Than $13,000
Local Ataxia group has International Ataxia Awareness Day restaurant outing planned

CLEVELAND, OH – The Northeast Ohio Walk n’ Roll to Cure Ataxia took place Sunday, Aug. 27, at Edgewater Park in Cleveland, and the National Ataxia Foundation (NAF) Northeast Ohio area support group raised more than $13,000 for research and services from the NAF. The event was attended by more than 145 people, helping raise awareness for Ataxia, socialize and have a fundraising walk n’ roll in beautiful Edgewater Park. Much of the group will reunite for a meeting on Sept. 25 at Bahama Breeze restaurant in Beachwood, OH.

Event attendees enjoyed meeting with each other, discussing and learning about developments in Ataxia research and ways to live with Ataxia, watching a performance from the Olmsted Performing Arts dance team, hearing information from guest speakers, including Beth Glass of Maximum Accessible Housing of Ohio an organization that belongs to the ADA Cleveland group, had refreshments and went on a wonderful walk n’ roll through Edgewater, enjoying the park, overlooking sparkling Lake Erie on a picture perfect day.

There was music throughout the day from DJ Eazy, of Eazy-N-Crew Music Productions, who also was MC for the auction and raffles throughout the day that raised more than $3,000 for the NAF. There were action and prize items from the Cleveland Cavaliers, the Rock n’ Roll Hall of Fame, the Cleveland Browns, the Lake Erie Monsters, Fount Leather Goods, Levin Furniture, Playhouse Square, Lush and Lovely Floristry, Maxi’s Restaurant Little Italy, the Lake County Captains, Planet Fitness, Trader Joe’s and more.

Local businesses Hyland Software, MC Mobility, PLIDCO (the Pipe Line Development Company) and Levin Furniture , along with Hillary Taylor, Laura Ospanik and Patt Denihan were the sponsors of the 2017 NEO Walk n’ Roll to Cure Ataxia. All the money from sponsors and donated at Northeast Ohio Walk n’ Roll to Cure Ataxia went to the NAF, and International Ataxia Awareness Day (IAAD) Sept. 25 was promoted by local organizers.

On IAAD, Monday Sept. 25, members of the NAF Northeast Ohio area support group, friends and supporters, will meet at Bahama Breeze restaurant – 3900 Orange Pl. Beachwood, OH, www.bahamabreeze.com - at 6:30 p.m. to recognize IAAD and continue connections and support avenues discovered at the NEO Walk n’ Roll to Cure Ataxia this year. Everyone is welcome to attend the IAAD meeting.

Donations to the NEO Walk n’ Roll to Cure Ataxia can still be made by visiting http://www.ataxia.org/walk/NEOWalk. Eazy-N-Crew Music Productions and DJ Eazy can be contacted at djeazy2003@yahoo.com. The NAF Northeast Ohio area support group would like to thank the Cuyahoga County Library system, iheartradio Cleveland, Record Publishing Company and all other supporters for helping publicity efforts, and every person and business who donated an auction item.
The NAF Northeast Ohio area support group welcomes anyone interested to find out more information at http://ataxiafoundationcleveland.blogspot.com and plans another Walk n’ Roll to Cure Ataxia next year.

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