Ataxia support group - Survey for member feedback

hello all below is info and a survey from the National Ataxia Foundation ---- Hello Support Group Leaders, With the end of the year quickly approaching, we are hoping to collect some feedback from members about their Support Group experiences and what they hope to see in the coming year. Collecting this information will help us to determine where we can best be providing support for groups and their leaders and can also help you to determine what your attendees hope to see in the future. We’ve created this quick and easy survey and believe that you all are the best resource for getting it out to your members. It only takes a few minutes to complete and will be so valuable! The survey can be accessed by following this link: https://www.surveymonkey.com/r/863CMV9 If at any point, you wish to see a report of the data that is being submitted by your specific support group, I will be happy to provide that for you! Please forward to all members in your contact list as soon as possible and make sure you complete the survey as well! The survey deadline is 12/23/2021. Sarah Pilato Program Coordinator National Ataxia Foundation (763)553-0093 www.ataxia.org

Dec. 9, 11 am Chair Yoga through NAF

Do you or someone you care about struggle to find ways to stay active and mobile? For people affected by Ataxia it can be hard to stay mobile when challenged with balance and other neurological issues. That's why we're offering this special Chair Yoga and Mobility online series for the global Ataxia community. Register: https://bit.ly/3rm66Pt

Upcoming NEO Ataxia support group Zoom meeting, Nov 3

Mike Hammer is inviting you to a scheduled Zoom meeting. Topic: NEO ATAXIA Support Time: Nov 3, 2021 06:00 PM Eastern Time (US and Canada) Every month on the First Wed, until Dec 1, 2021, 2 occurrence(s) Nov 3, 2021 06:00 PM Dec 1, 2021 06:00 PM Please download and import the following iCalendar (.ics) files to your calendar system. Monthly: https://us02web.zoom.us/meeting/tZIof-6przIiG9eO7Q-QhiPycQoRyyqlVwf5/ics?icsToken=98tyKuGuqzMtG9WcuBiERpwAGYqgKOvzmFhHjfpYs0jUThFbazPvNdNNAKtmAdTm Join Zoom Meeting https://us02web.zoom.us/j/86587119813?pwd=K210aDZqSEQ2TmQ4YlpqZUZRQ1h4QT09 Meeting ID: 865 8711 9813 Passcode: 137015 One tap mobile +13017158592,,86587119813#,,,,*137015# US (Washington DC) +13126266799,,86587119813#,,,,*137015# US (Chicago) Dial by your location +1 301 715 8592 US (Washington DC) +1 312 626 6799 US (Chicago) +1 929 205 6099 US (New York) +1 253 215 8782 US (Tacoma) +1 346 248 7799 US (Houston) +1 669 900 6833 US (San Jose) Meeting ID: 865 8711 9813 Passcode: 137015 Find your local number: https://us02web.zoom.us/u/keJaafNfw9

NEO Ataxia Support group monthly Zoom, next week Oct 6

 NEO ATAXIA Support

Description

this is a monthly zoom social for those interested in the NEO Ataxia support group

Time

Oct 6, 2021 06:00 PM Eastern Time (US and Canada)

Join Zoom Meeting
https://us02web.zoom.us/j/86587119813?pwd=K210aDZqSEQ2TmQ4YlpqZUZRQ1h4QT09

Today is International Ataxia Awareness Day!

 Ataxia is a rare disease with symptoms that worsen over time making it hard to walk, talk and coordinate movement. Learn more: www.ataxia.org

- Share our post to help others learn about Ataxia. #IAAD21

Zoom social meeting, NEO Ataxia support group, scheduled for Sept 1 at 6 pm

 Hey all 

The next Zoom social meeting of the National Ataxia Foundation, Northeast Ohio Ataxia support group is next week Sept 1 at 6 pm

everyone is invited

the info to connect is below

International Ataxia Awareness Day (IADD) is coming up on Sept 25th we will talk about how we will celebrate it

plus other updates on your summer activities and new events planned

and anything else you wanna talk about

see you all Sept 1 at 6 pm

Mike Hammer is inviting you to a scheduled Zoom meeting.

Topic: NEO ATAXIA Support
Time: Sep 1, 2021 06:00 PM Eastern Time (US and Canada)
        Every month on the First Wed, until Dec 1, 2021, 4 occurrence(s)
        Sep 1, 2021 06:00 PM
        Oct 6, 2021 06:00 PM
        Nov 3, 2021 06:00 PM
        Dec 1, 2021 06:00 PM
Please download and import the following iCalendar (.ics) files to your calendar system.
Monthly: https://us02web.zoom.us/meeting/tZIof-6przIiG9eO7Q-QhiPycQoRyyqlVwf5/ics?icsToken=98tyKuGuqzMtG9WcuBiERpwAGYqgKOvzmFhHjfpYs0jUThFbazPvNdNNAKtmAdTm

Join Zoom Meeting
https://us02web.zoom.us/j/86587119813?pwd=K210aDZqSEQ2TmQ4YlpqZUZRQ1h4QT09

Meeting ID: 865 8711 9813
Passcode: 137015
One tap mobile
+13017158592,,86587119813#,,,,*137015# US (Washington DC)
+13126266799,,86587119813#,,,,*137015# US (Chicago)

Dial by your location
        +1 301 715 8592 US (Washington DC)
        +1 312 626 6799 US (Chicago)
        +1 929 205 6099 US (New York)
        +1 253 215 8782 US (Tacoma)
        +1 346 248 7799 US (Houston)
        +1 669 900 6833 US (San Jose)
Meeting ID: 865 8711 9813
Passcode: 137015
Find your local number: https://us02web.zoom.us/u/keJaafNfw9

Yoga links and possible group outing, NEO Ataxia support group follow

hey all

we had a yoga instructor give a zoom chair yoga class to our group a few months ago

these are links to a recorded class on youtube that you can watch and try out and do ohn a regular basis if you missed the zoom with us

everyone who was there enjoyed it

the instructor is named

Judith Eugene

she is founder of www.LovingHandsGroup.com

this is the link for the Introduction to Chair Yoga by Judith Eugene

https://www.youtube.com/watch?v=p4SBOjXhgq8

this is the link for a full chair yoga class from Judith Eugene

https://www.youtube.com/watch?v=G-_zBtZbOXY

also

who is interested in a possible outing at a baseball game before baseball season ends

we could meet up at the Lake County Captains in Eastlake or the Lake Erie Crushers in Avon or at the Cleveland Indians/Guardians and enjoy a nice day

and we can probably help if transportation is needed

please let me know if you are interested

- mike 

NAF offers chair yoga class on Jul 6

 Topic

Chair Yoga & Mobility For Ataxia

Description

Do you or someone you love have trouble walking or moving steadily? Or
with fine motor tasks like eating, writing, or buttoning a shirt? People
affected by Ataxia deserve more from their movement practice than what the typical chair yoga classes can provide.
That's why we're offering this Chair Yoga and Mobility online series for the
global Ataxia community.Our philosophy is simple, if you can breathe you
can do yoga. We teach a non dogmatic, no- fluff approach to practice.
Join Natalie from Sacred Mountain Yoga as she guides you through simple
movements, mobility exercises and conscious breathing to help relieve pain
and stress, maintain mobility and improve mood and mental health.
It's accessible for people in chairs and wheelchairs and no previous
experience is necessary to attend.

Time

Jul 6, 2021 11:30 AM CENTRAL time

People can register for this Chair Yoga class at https://us02web.zoom.us/meeting/register/tZcqcO6hrTkpHNL7tdHbjwzL9RrV9lEc7mmU

zoom social meeting, june 2nd at 6 pm

 here is the info for the next zoom meeting for NEO ataxia on wednesday june 2 at 6 pm

Topic: NEO ATAXIA Support

Time: Jun 2, 2021 06:00 PM Eastern Time (US and Canada)

Join Zoom Meeting

https://us02web.zoom.us/j/86587119813...

it is summer time we can discuss summer activities and right now i am thinking about shoes, anybody got awesome easy slip on shoes etc? also an update on chair yoga stuff and any info or questions you wanna talk about

all meetings will last 45 minutes, unles we decide to keep socializing then we must reenter the same link after we all leave

future meetings will be Every month on the First Wed, until Dec 1, 2021,

Jul 7, 2021 06:00 PM

Aug 4, 2021 06:00 PM

Sep 1, 2021 06:00 PM

Oct 6, 2021 06:00 PM

Nov 3, 2021 06:00 PM

| Dec 1, 2021 06:00 PM

next zoom social meeting, june 2nd at 6 pm

here is the info for the next zoom meeting for NEO ataxia on wednesday june 2 at 6 pm0

Topic: NEO ATAXIA Support

Time: Jun 2, 2021 06:00 PM Eastern Time (US and Canada)

Join Zoom Meeting

https://us02web.zoom.us/j/86587119813?pwd=K210aDZqSEQ2TmQ4YlpqZUZRQ1h4QT09

it is summer time we can discuss summer activities and right now i am thinking about shoes, anybody got awesome easy slip on shoes etc?

all meetings will last 45 minutes, unles we decide to keep socializing then we must reenter the same link after we all leave

future meetings will be  Every month on the First Wed, until Dec 1, 2021,

        Jul 7, 2021 06:00 PM
        Aug 4, 2021 06:00 PM
        Sep 1, 2021 06:00 PM
        Oct 6, 2021 06:00 PM
        Nov 3, 2021 06:00 PM
|        Dec 1, 2021 06:00 PM

NEO Ataxia: Monthly Zoom social meetings, first Wednesday of each month at 6pm

Hello everyone, 

 This is the info for the upcoming Zoom social meeting, open to everyone. 

Topic: NEO Ataxia Meeting

Time: May 5, 2021 6:00 PM 

 Join Zoom Meeting:https://us02web.zoom.us/j/84796984272?pwd=Y1VUNFRJbjVsdFZRRitpMDdvazhUUT09 

 Since the weather is warming up, maybe, what does everyone hope to do in the warm summer months? What is your favorite warm weather exercise activity? We will also discuss chair yoga classes and the possibility of some social picnic, as well as participation in future Walk n' Roll to Cure Ataxia events. 

 We have Zoom social meetings scheduled for Every month on the First Wed, until Nov 3, 2021. The full schedule is below. 

Full schedule of upcoming meetings for your calendars 

Topic: NEO Ataxia Support Group meetings 

 Jun 2, 2021 06:00 PM 

 Jul 7, 2021 06:00 PM 

 Aug 4, 2021 06:00 PM 

 Sep 1, 2021 06:00 PM 

 Oct 6, 2021 06:00 PM 

 Nov 3, 2021 06:00 PM 

 see everyone on May 5 

 - Mike

Chair Yoga, Thurs April 22 at 6pm

Topic: Chair Yoga with NEO Ataxia Support Group Time: Apr 22, 2021 06:00 PM Eastern Time Join Zoom Meeting https://us02web.zoom.us/j/89896357491?pwd=a3BreG0rdTl0VGIwV0twbTFod3RpUT09 Meeting ID: 898 9635 7491 Passcode: 108135

FREE Chair yoga class, via Zoom, on April 22 at 6 pm for NEO ataxia support group members

FREE Chair yoga class, via Zoom, on April 22 at 6 pm for NEO ataxia support group members On April 22 at 6 pm there will be a FREE Chair Yoga class for NEO Ataxia support group members via Zoom. The class will be tought by Judith Eugene of The Loving Hands Group - www.LovingHandsGroup.com. She teaches Chair Yoga, among other things, on a regular basis to people with mobility issues. Please put it on your calender and plan to attend. There will be a zoom link sent out to everyone who wants to join us. If you are interested in this FREE Chair Yoga class, or would like more information, e-mail me at mikey.hammer@gmail.com. Thanks. See you all on April 22

support resource: swallowing exercises

 https://swallowingdisorderfoundation.com/free-swallow-exercises-pdf/

This is the PDF from the website that you can download if you would like

we had discussed some swallowing and other issues at our latest zoom meeting if anyone has things to discuss you are always invited to attend we will have zoom meetings the first wednesday of the month starting in may

Sunday April 4, NEO Ataxia support group meeting

 

Hey all,

We have a meeting on April 4 at 5:30 pm

it will be the first Sunday of April

Topic: NEO Ataxia support group meeting
Time: Apr 4, 2021 05:30 PM Eastern Time (US and Canada)
        

Join Zoom Meeting
https://us02web.zoom.us/j/73116799367?pwd=Q0ZqbDcwaXIyOER4SW9ITW1ucUZiUT09

in the coming months, beginning in May, we will hold regular zoom meetings of the NEO ataxia support group on Wednesday evenings at 6 pm, the first Wednesday of each month.

FREE Chair yoga class, via Zoom, on April 22 at 6 pm for NEO ataxia support group members

On April 22 at 6 pm there will be a FREE Chair Yoga class for NEO Ataxia support group members via Zoom.

The class will be tought by Judith Eugene of The Loving Hands Group - www.LovingHandsGroup.com. She teaches Chair Yoga, among other things, on a regular basis to people with mobility issues.

Please put it on your calender and plan to attend.

There will be a zoom link sent out to everyone who wants to join us.

If you are interested in this FREE Chair Yoga class, or would like more information, e-mail me at mikey.hammer@gmail.com.

Thanks.

See you all on April 22.

march 7 zoom meeting

 Topic: NE Ohio Ataxia Meeting

Time: Mar 7, 2021 05:30 PM 

Join Zoom Meeting

https://us02web.zoom.us/j/84546104187?pwd=bVVRWmx0SjZXWG82RmhiMXlaL3Mwdz09

Meeting ID: 845 4610 4187

Passcode: 632398

One tap mobile

+13017158592,,84546104187#,,,,*632398# US (Washington DC)

+13126266799,,84546104187#,,,,*632398# US (Chicago)

Dial by your location

        +1 301 715 8592 US (Washington DC)

        +1 312 626 6799 US (Chicago)

        +1 929 205 6099 US (New York)

        +1 253 215 8782 US (Tacoma)

        +1 346 248 7799 US (Houston)

        +1 669 900 6833 US (San Jose)

Meeting ID: 845 4610 4187

Passcode: 632398

Possible Chair Yoga, NEO Ataxia support group meeting on Zoom, March 7

 Hi all,

We have another Zoom online video meeting of the NEO Ataxia support group on Sunday March 7 at 5:30 pm.

Also, who is interested in a online Chair Yoga class offered to our group by Judith Eugene of The Loving Hands Group - www.LovingHandsGroup.com

Loving Hands Group also offers additional classes and resources the NEO Ataxia support group may be able to take advantage of. Please let us know if you are interested in a Chair Yoga class - which you can do on your webcam or justy by calling in - and learning about other Loving Hands group programs from Judith.

- Mike

mikey.hammer@gmail.com

Covid Vaccines and Ataxie webinar on Tuesday Feb 16

NAF announces that a virology and vaccine expert joining the Covid Vaccines and Ataxie webinar on Tuesday Feb 16. Join NAF Tuesday to ask questions about the COVID vaccines. Register: https://bit.ly/3jA9twg

upcoming covid and ataxia webinar on ataxia.org

 

COVID Vaccines and Ataxia

---

1. Tue, Feb 16, 2021 4:00 PM - 5:00 PM EST

you can register for this event on ataxia.org if you are interested in attending

Join us Sunday at 5:30 pm est for the Northeast Ohio Ataxia Support Group Virtual Meeting

Join us Sunday at 5:30pm est for the Northeast Ohio Ataxia Support Group Virtual Meeting

The Northeast Ohio Ataxia Support Group is meeting virtually.

We hope you'll join us! Meeting information is below.

JOIN OUR VIRTUAL MEETING

Sunday - February 7th

5:30pm - 7:00pm

Join the Zoom Meeting:

https://us04web.zoom.us/j/73116799367...

Meeting ID: 731 1679 9367

Password: s0gqci

Call In Phone Numbers:

One tap mobile

+13126266799,,937025370# US (Chicago)

+16465588656,,937025370# US (New York)

Dial by your location

+1 312 626 6799 US (Chicago)

+1 646 558 8656 US (New York)

+1 346 248 7799 US (Houston)

+1 669 900 9128 US (San Jose)

+1 253 215 8782 US

+1 301 715 8592 US

For more information contact

Julie Clarich

440-666-6078

julieplus3@gmail.com

this Friday - Webinar: COVID-19 Vaccine and Ataxia

 

Johns Hopkins Ataxia Center Webinar: COVID-19 Vaccine and Ataxia

January 22 @ 1:00 pm - 2:00 pm

Please join us for a presentation COVID-19 Vaccine and Ataxia by Arita McCoy, M.S.N., C.R.N.P., JHU Ataxia Center, followed by a Q & A   1-2pm EST

No Registration is required. CLICK HERE to join

For more information contact:

Donna DeLeno Neuworth, Ataxia Center Health Educator

Johns Hopkins University, Department of Neurology

Ddeleno1@jhmi.edu

https://ataxia.org/event/johns-hopkins-ataxia-center-webinar-covid-19-vaccine-and-ataxia/?fbclid=IwAR2XcGKtSRwNTrgssekWTFL5m76dasOba8OSg0sCNZdPxOpyF38aIf_es2U

next monthly zoom meeting

 Topic: NE Ohio Ataxia Mtg

Time: Feb 7, 2021 5:30 PM

Join Zoom Meeting:

https://us02web.zoom.us/j/87823674099?pwd=aS9DSXhkZXR0eHE5RytKSTZpZWdLQT09

Meeting ID: 878 2367 4099

Passcode: 724007