Saturday, December 15, 2018

Info about legal assistance for those with special needs

Hello All:
The linked newsletter has tons of useful information. Please take a moment to check it out.


Our attorney, Hillary Taylor, was formerly with this law firm and assists us in our planning. She is a huge supporter of the Northeast Ohio Ataxia support group and has donated to several of our Walk and Roll events. You may contact her at 330-933-94592.
Regards,
Carmen Pieragastini


Friday, October 12, 2018

Neurologists and Specialty Clinics

Hi all,

Below is a list of Neurologists that deal with Ataxia in Ohio, there is also one movement disorder clinic in Cinci.
Carmen Pieragastini was able to gather some of this info, and some of it is on the Natational Ataxia Foundation website - https://ataxia.org/neurologists-and-specialty-clinics/  - and it will be reposted on the group blog and newly formed Facebook page - https://www.facebook.com/groups/157330301877408/  - set up by Rebecca Bartko.


Mark Walker, MD  
Department of Neurology University Hospitals - 
Case Medical Center  11100 Euclid Ave, HAN5040 Cleveland, OH 44106 
Phone: (216) 286-0315 Fax: (216) 844-4785 
Donald Gilbert, MD 
Cincinnati Children's Hospital Medical Center Movement Disorders Clinic-Neurology  
3333 Burnet Ave. ML 2015 Cincinnati, OH 45230 
Phone: (513) 636-4222 Fax: (513) 636-3980 (Sees adult patients in selected cases.)  

Fredy J. Revilla, MD 
Head, Division of Movement Disorders  
Department of Neurology University of Cincinnati 
222 Piedmont Avenue, Suite 3200 Cincinnati, Ohio 45219 
Phone: (513) 475-8730 Fax: (513) 475-8033 

Richard J. Lederman, MD, PhD  Debabrata Ghosh, MD (Sees children)  Cleveland Clinic Neurological Institute  
9500 Euclid Ave / S91  Cleveland, OH 44195 
Phone: (216) 444-5559 Fax: (216) 445-1563  

Thomas Enlow, MD 
Neurodevelopmental Center at  Akron Children’s Hospital 
215 W Bowery St, 4th Floor, Ste 4400  Akron, OH 44308 Phone: (330) 543-8050 Fax: (330) 543-8054 (Sees children)  

Yasushi Kisanuki, MD  
Department of Neurology  Division of Neurogenetics  The Ohio State University 395 W. 12th Ave, 7th Floor.  Columbus, OH 43210 
Phone: (614) 293-4969 Fax: (614) 293-4688  

The movement disorder clinic is

the list of Neurologists and Specialty Clinics on the National Ataxia Foundation website is at - https://ataxia.org/neurologists-and-specialty-clinics/

Wednesday, September 19, 2018

IAAD dinner at Cabin of Willowick, Sept 25th at 6:30 pm

There will be a social dinner outing Sept 25th at The Cabin of Willowick - http://www.thecabinofwillowick.com -  at 6:30 p.m.
Everyone is invited to join us.
Ask for the National Ataxia Foundation group when you get to The Cabin of Willowick.


Saturday, September 15, 2018

Northeast Ohio area, National Ataxia Foundation, teleconference meeting recap


Hello All:
Thank you to everyone who was able to join us on our call Wednesday evening.  
It is always great to have open dialog and share information. There is always something new to learn!

Julie Clarich reviewed the success of our most recent Walk n' Roll to Cure Ataxia at Lakewood Park and asked for feedback on what people liked or suggestions they may have for future events. One suggestion was that we would include speakers. If you have any other suggestions, please let us know. We strive to be inclusive and your input will help our events be more successful. 

We asked for ideas on future fundraising. One suggestion was to hold an indoor event during the winter (Feb/Mar). Another idea was to have an actual outdoor marathon in the Spring. This type of event should be sponsored and supported by local corporations/businesses who would assist in developing teams. Participants would pay a registration fee. It would take a lot of planning. Ginger is going to find out more about a local company that will manage the entire process and what their fee would be. We also talked about random one time events at local establishments like pizza places or bars who would split their proceeds for the night with us. Please share any ideas you may have!

Mike Hammer reminded everyone about our dinner outing on Sep. 25th in honor of International Ataxia Awareness Day. We will be meeting at The Cabin of Willowick Restaurant in Willowick, OH (28810 Lakeshore Blvd, Willowick, OH 44095 - http://www.thecabinofwillowick.com) at 6:30 pm. Everyone is invited. Just ask for the National Ataxia Foundation group. Hope you can join us!


Ginger Pieragastini shared information about the National Conference in Philadelphia this past April and reminded everyone that the 2019 conference is being held in Las Vegas at the Flamingo Hotel and Casino on March 29/30. Please check the NAF website and our Facebook page - https://www.facebook.com/NortheastOhioWalknRoll - for more information.

Carmen Pieragastini had an update on neurologists in Ohio that are listed with NAF. The list is being sent in a separate e-mail and will be posted on the Northeast Ohio area support group website -  http://ataxiafoundationcleveland.blogspot.com/


Hope to see you at the IAAD dinner on Sep. 25th!

Thursday, September 6, 2018

National Ataxia Foundation Northeast Ohio area support group: Teleconference Meeting, Wednesday June 12

National Ataxia Foundation Northeast Ohio area support group: Teleconference Meeting, Wednesday June 12: Hello All!! The next National Ataxia Foundation, Northeast Ohio area support group meeting will be a TELECONFERENCE MEETING through http:...

Teleconference Meeting, Wednesday June 12

Hello All!!
The next National Ataxia Foundation, Northeast Ohio area support group meeting will be a TELECONFERENCE MEETING throughhttp://www.freeteleconference.com on Wednesday, Sept. 12th at 6:30 p.m.. We will discuss the upcoming International Ataxia Awareness Day (IAAD) dinner outing and the awesome 2018 NEO Walk n' Roll to Cure Ataxia which took place at Lakewood Park last month

Tuesday, August 28, 2018

Thank You

Thanks to everyone who helped plan, support or generously contribute to the 2018 NEO Walk n' Roll to Cure Ataxia. It was great to see everyone who attended the event. There were about 125 attendees who had a wonderful time talking, laughing and learning, enjoying themselves and supporting each other. It was a beautiful day, we had a DJ to entertain us, lots of attendees were able to donate to win fabulous prizes and everyone did a great job raising Ataxia awareness in the community.
See you all again next time.
This Thank You message was created by Laura Ospanik who took the picture too and greatly helped us with graphics for the event, once again, this year.