NAF Cleveland area support group Newsletter, 1

HELLO From CARMEN

Welcome to the first issue of the National Ataxia Foundation, Cleveland area support group newsletter. The plan is to release a newsletter quarterly – Winter, Spring, Summer and Fall – and make it available in print at the regular meetings of our group and electronically, via e-mail distribution and the support group website.

In thinking about this article, I pondered many things. Let me thank Mike for helping put this together and everyone who has been involved with our support group for making the group, meetings, social outings, discussions and more happen. The National Ataxia Foundation (NAF) Cleveland area support formed 2-3 years ago, I planned some meetings through the NAF at a few Cuyahoga County libraries and it went from there. Frankly, we are still developing an identity. What can we do to best support the folks with Ataxia, their caregivers, & family & friends? - Our group has grown since its inception and even staged the first Northeast Ohio Walk n’ Roll to Cure Ataxia (more about that later). But back to the newsletter, the primary reason for it is to keep you up to date on the events and happenings of the local support group. The newsletter and our blog should keep you current on past and future events. The second reason for the newsletter is to build momentum for the 2017 Northeast Ohio Walk n’ Roll to Cure Ataxia. While we lack some specifics about the first Walk n’ Roll to Cure Ataxia, as the 2016 event was just completed, it is never too early to begin thinking about next year’s event.

Let us talk about the 2016 NEO Walk n’ Roll to Cure Ataxia. It is important to thank everyone who worked on it, especially Susan Kresnye and her team. We had no experience staging a Walk n’ Roll to Cure Ataxia, so everything for us was a first. The goals of the event are to build community awareness of the disease and to raise research funds. Community awareness is still our biggest challenge. Most people have not even heard of Ataxia. The event was not perfect, however the results far exceeded our expectations.  We estimate over 100 folks participated and we raised approximately $13,000 (our goal was $10,000) for the NAF and Ataxia research. This is a solid foundation on which we can build.

This is for the benefit of all of us and our families. While there at least 32 forms Ataxia (that we know of) there is a potential relationship with MS, Parkinson’s and Lou Gehrig’s diseases. While Ataxia is classified as a low profile disease and therefore research dollars are limited, the other related diseases are classified as high profile with extensive research and clinical trials happening.  In summary, there is much going on in all of these areas. A cure for one may mean treatments for related diseases. You get the picture. Sitting on the sideline and letting others do the heavy lifting is unfair to you. Keep in mind WE ALL BENEFIT from your participation as we are in a race for time (Ataxia is frequently hereditary, so a cure not only affects us but may help our off-springs). We need to support and educate each other. I hope and pray we are closer to a cure than ever.

We need all hands on deck, ESPECIALLY YOU. DO IT FOR YOU. Thanks again, Carmen  Carmen Pieragastini: Cleveland area support group Ambassador for the National Ataxia Foundation willowpier@roadrunner.com        

         
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Let us know:

Should we do group Facebook page? Open to the public? Should we do year round NEO Walk n’ Roll Facebook page? Should we contact local colleges, medical departments for volunteers? Is anyone interested in coordinating volunteers and partnerships?
Should we have meetings at different places? Suggestions? Should we plan a fundraiser night? Where?  Does anyone know of a local doctor to go to? What are you looking for the group to do?

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Thank you to everyone who attended and participated in the 2016 Northeast Ohio Walk n’ Roll to Cure Ataxia. We are planning another walk in 2017 so if you have any suggestions or feedback from the 2016 event please e-mail Carmen or post your suggestions in our group blog or in an e-mail to everyone

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Find more Ataxia info at  ataxia.org  - twitter.com/NAF_Ataxia - www.youtube.com/user/NatlAtaxiaFound -  www.facebook.com/ataxiafoundation

October Meeting

Our next meeting is Tuesday, October 4, 2016 at the Garfield Hts branch of the Cleveland Public Library at 6:30. Guest speaker will be Kevin Pank of Sagemark Consulting to discuss long term financial planning. All are welcome.

Cleveland Support Group helps promote International Ataxia Awareness Day

For Immediate Release:

National Ataxia Foundation Cleveland Area support group meets in Sept. and Oct.
International Ataxia Awareness Day is Sept. 25^th

NORTHEAST OHIO – The National Ataxia Foundation (NAF) – www.ataxia.org - and other ataxia organizations throughout the world have declared Sept. 25, 2016 as International Ataxia Awareness Day to help get the word out about Ataxia. An estimated 150,000 individuals in the United States have Ataxia, a debilitating condition that is a rare and often fatal neurodegenerative disorder. There is currently no cure for Ataxia and limited treatments for it.

Members of the NAF Cleveland area support group - http://ataxiafoundationcleveland.blogspot.com – will recognize the day, after having a social meeting at Applebee’s in Independence on Sep. 15. The group will meet again in October to discuss ongoing health and support issues.

The NAF Cleveland area support group is a group that anyone with Ataxia, or affected by Ataxia or a similar neuromuscular disease, can join for resources and discussions. The group usually meets monthly in a Cuyahoga County Library or in a restaurant for social events. The NAF Cleveland area support group was organized two years ago by Carmen Pieragastini and his wife Virginia (Ginger) who live in Willowick. The support group has around 20 regular members from Fairview to Euclid to Mansfield and everywhere in between.

Carmen developed symptoms of Ataxia about a decade ago, his mother, Eleanor, suffered with the disease and eventually died from it.

Last month the NAF Cleveland area support group organized the Northeast Ohio Walk n’ Roll to Cure Ataxia at the Keystone Pavilion of the Cleveland Metroparks, West Creek Reservation in Parma, Ohio. The event was sponsored by the Pipe Line Development Co. (PLIDCO) of Westlake, OH and attended by about 100 people. More than $12,500 was raised for the NAF and there were prizes auctioned off from the Cleveland Browns, the Lake Erie Monsters, ROAD ID, Levin Furniture, Olmsted Performing Arts and more.

To find out more information about International Ataxia Awareness Day (IAAD) visit - www.ataxia.org/events/international-ataxia-awareness-day.aspx - and get your own IADD kit to help promote the day. The NAF Cleveland area support group and group events and meetings visit http://ataxiafoundationcleveland.blogspot.com.

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Northeast Ohio Walk n' Roll To Cure Ataxia wrap up

On August 14th, 2016 was the Northeast Ohio Walk n' Roll To Cure Ataxia which took place at the Cleveland Metroparks in Parma, OH. There were 81 Walk n' Rollers and overall about attendees enjoyed refreshments, fun and an auction. The event raised more than $12,700 for the National Ataxia Foundation.

Thanks everyone for coming to the Northeast Ohio Walk n' Roll To Cure Ataxia Sunday. We had about 100 people and raised more than our goal of $10,000.

Help us and enjoy a perfect day for a picnic at the Northeast Ohio Walk n' Roll To Cure Ataxia on Sunday, Aug. 14

Hi All:

We have heard from many of you that you will be attending the walk along with family members who will be there to lend support! Participation from our members and their families is crucial to the success of this event. So mark your calendar for Sunday August 14th from 10 am -2 pm.

We will be setting up at 9 am and need help, so please come early if possible. Participants can register from 10-11. We will have the Silent Auction, Chinese Auction and 50/50 raffle following the walk.

So plan on attending and bring your family and friends too! There is plenty of room in the pavilion if anyone wants to pack a picnic and make a day of it.

See you there!

Best,
Carmen

NEO Walk n' Roll To Cure Ataxia gets Bronze Sponsor - Pipe Line Development C. (PLIDCO) of Westlake OH

Pipe Line Development Co.(Pildco) has become a Bronze Sponsor of the NEO Walk n' Roll To Cure Ataxia.
Thank you PLIDCO for helping us cure Ataxia and raise Ataxia awareness. Find out more about PLIDCO at http://www.plidco.com/ and visit the PLIDCO Facebook page at https://www.facebook.com/pipelinerepair/

Upcoming walk n rolls to cure ataxia

• Northeast OH Walk n’ Roll
  Parma, OH – August 14
  


• Michigan Walk n’ Roll
  Ann Arbor, MI – August 27
• Western PA Walk, Run n’ Roll
  South Park, PA – September 24

is anyone interested in attending the Michigan or Western PA Walks?

Contact Carmen and maybe we can arrange a group roadtrip - Carmen's email is

willowpier@roadrunner.com

admission tickets to the Rock and Roll Hall of Fame

Join us at The Northeast Ohio Walk n' Roll to Cure Ataxia on Aug. 14 for a chance to win great auction items like 4 admission tickets to the Rock and Roll Hall of Fame - www.rockhall.com

Northeast Ohio Walk n’ Roll To Cure Ataxia Coming August 14th

Northeast Ohio Walk n’ Roll To Cure Ataxia Coming August 14^th

NORTHEAST OHIO – The first ever Northeast Ohio Walk n’ Roll To Cure Ataxia will take place in Parma, OH on August 14^th. The Walk n’ Roll To Cure Ataxia is a fundraiser National Ataxia Foundation (NAF) groups across the world organize to raise money to help the NAF cure Ataxia, a rare neuromuscular disease. The Northeast Ohio Walk n’ Roll To Cure Ataxia is being organized by the NAF Cleveland area support group - http://ataxiafoundationcleveland.blogspot.com/. The group is for resources and discussions among anyone with Ataxia, or affected by Ataxia or a similar neuromuscular disease.

An estimated 150,000 individuals in the United States have Ataxia, a debilitating condition that is a rare and often fatal neurodegenerative disorder. There is currently no cure for Ataxia and limited treatments for it.

The Northeast Ohio Walk n’ Roll To Cure Ataxia will take place at the Keystone Pavillion of the Cleveland Metroparks, West Creek Reservation, in Parma, OH, from 10 a.m. to 2 p.m. on August 14^th. The goal is to raise $10,000 for the National Ataxia Foundation – www.ataxia.org - and ataxia research. Register for the walk or donate today at – www.ataxia.org/walk/cleveland.

There will be a DJ, refreshments, and auction items at the Northeast Ohio Walk n’ Roll to Cure Ataxia. To join the walk is free, although donations are encouraged. Participants can take part in all the fun, enjoy the gorgeous Cleveland Metroparks Keystone Pavillian and walk along the Metroparks walking path or just sit in the pavilion to get to know the other walkers and supporters.

All who support medical research, rare diseases and family, friends, or loved ones who struggle with disabilities and diseases are welcome to the Northeast Ohio Walk n’ Roll To Cure Ataxia. Raising awareness about Ataxia and having some fun is the main goal.

Northeast Ohio Walk n’ Roll To Cure Ataxia participants will enjoy a fantastic day, help save lives and have chances to win prizes donated by the Cleveland Browns, the Lake Erie Monsters, the Lake County Captains, Levin Furniture, Ohio State Football, Kuerig, the Rock n’ Roll Hall of Fame, Road ID and Olmsted Performing Arts, among others.

The Northeast Ohio Walk n’ Roll To Cure Ataxia event has raised more than $2,000 so far, about 20% of the way to their goal of $10,000. Register for the walk or donate today at – www.ataxia.org/walk/cleveland.

The NAF Cleveland area support group was organized two years ago by Carmen Pieragastini and his wife Virginia (Ginger) who live in Willowick. Carmen developed symptoms of Ataxia about a decade ago. The support group has around 20 regular members from Fairview to Euclid to Mansfield and everywhere in between. Many of the support group members are impacted by the devastating effects of Ataxia. Ataxia can affect persons of any age. There are inherited and acquired types of ataxia. Members Michael and Julie Hammer, who live in North Olmsted, were born with an inherited type of Ataxia.

The Northeast Ohio Walk n’ Roll to Cure Ataxia will take place on August 14, 2016 from 10 a.m. to 2 p.m. at the Keystone Pavilion of the Cleveland Metroparks, West Creek Reservation in Parma, OH. Register for the walk or donate today at – www.ataxia.org/walk/cleveland.

Find out more information about the NEO Walk n’ Roll to Cure Ataxia at https://www.facebook.com/NortheastOhioWalknRoll and find more information on the NAF and the Walk n’ Roll to Cure Ataxia events that take place across the United States at http://www.ataxia.org/events/walk_n_roll.aspx.

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July 19 meeting info

Hello All:
Excitement is mounting as we are one month AWAY FROM OUR FIRST ANNUAL WALK AND ROLL FUNDRAISER!!!!!

I talked with Sue to make sure we are on the same page and to keep updated on our progress with donations. We will be sharing an updated list  of sponsors and donations at the meeting. Be sure to go onto the webpage and create your own personal account so your friends and family can donate under your name, or they can create their own page for donations. Remember that every dollar pledged goes toward research.

As a member of the donation and basket committees, I would like to have everyone who has any donations to bring them to the meeting. I will take them and prior to the walk, I will ask members of the basket committee to meet at my house (once will probably do it) to assemble the baskets. We have some awesome donations!!!!

If you have any questions, please let me know.

Thanks,
Ginger

Walk n Roll video trailer, from past Walk n Roll

Here is an example of the awesomeness at a Walk n' Roll to Cure Ataxia, don't forget to put the NEO Walk n' Roll to Cure Ataxia on your calendar and join us for awesomeness August 14.
https://youtu.be/IXj7nWDzD3Q

Northeast Walk n' Roll Fundraising Update

We are about 15% to our fundraising goal, with just about 5 weeks to go. Visit www.ataxia.org/walk/cleveland to register and donate now, and encourage everyone you know to do the same. Let's meet our goal and cure Ataxia.

July meeting

The July meeting will be at 6:30, Tuesday, July 19, at the site of the Metro Parks in Parma (directions in May meeting email). It's our last meeting prior to the walk.

See you there.

Carmen

Northeast Ohio Walk n' Roll webpage launches

JOIN US, DONATE AND GET ALL THE INFO YOU NEED ON THE NORTHEAST OHIO WALK N' ROLL TO CURE ATAXIA AT -  http://ataxia.donorpages.com/2016ClevelandWnR/

June Social meeting

The next social will be at Applebee's on Rockside at 6:30, Thursday, June 23. Hope to see everyone, especially with the walk only 2 months from then. If I missed anyone being out, let me know (think everyone at the last meeting gave us their dates, hope I got them right.)

Thanks,
Carmen

2016 Northeast Ohio Walk n' Roll to Cure Ataxia Facebook page

There is now a 2016 Northeast Ohio Walk n' Roll to Cure Ataxia Facebook page which will have all the current information about the event and will have some pictures and logos and opportunities to get involved.

Check it out, it has just been updated and will be updated weekly. Like the page and invite all your Facebook friends to like it too.

https://www.facebook.com/NortheastOhioWalknRoll/

May meeting - May 19 at Keystone Reservation in Parma

We will be having our May Support Group meeting on Thursday, May 19th at 6:30. It will be held at the location of our Walk and Roll so we all have a chance to see it! There is a pavilion in case of inclement weather.

You van find the location (map and directions) here - http://www.clevelandmetroparks.com/Main/Keystone-Reservable-Shelter.aspx


Looking forward to seeing everyone!

Thanks, Carmen

SAVE THE DATE - National Ataxia Foundation Cleveland Support Group Announces Northeast Ohio Walk n’ Roll to Cure Ataxia On August 14, 2016

National Ataxia Foundation Cleveland Support Group Announces Northeast Ohio Walk n’ Roll to Cure Ataxia On August 14, 2016

The National Ataxia Foundation Cleveland support group is organizing the first annual Northeast Ohio Walk n’ Roll to Cure Ataxia on August 14, 2016 from 10 a.m. to 2 p.m. at the Keystone Pavilion of the Cleveland Metroparks, West Creek Reservation. 


Save the Date please.
Where: Keystone Pavilion of the Cleveland Metroparks, West Creek Reservation. 

When: August 14, 2016

For more information about the national Walk n’ Roll events visit the NAF’s Walk n’ Roll webpage at http://www.ataxia.org/events/walk_n_roll.aspx.

We will need walk participants, event sponsors, event day volunteers and more.

More information will be available soon.

If you would like to be involved or have any questions please contact Mike Hammer at mikey.hammer@gmail.com.

Social get together April 14

Our next get together will be on Thursday April 14th at Carrabas Restaurant 5030 Tiedemann Rd Brooklyn, OH at 6:30 p.m.. See you then!

Live Webcast from the National Ataxia Foundation conference - Sunday April 3

Website Contact Resources Research Links Please share this email with others using the "Forward this email" button found at the bottom of this notice.   http://www.ustream.tv/channel/sXJXK4asHL2  Name | Company | Phone | Ema l | We To ensure that you continue to receive our emails, please add naf-eblast@ataxia.org  to your address book.

March 12 meeting minutes

Here are the minutes from our meeting on Saturday:

Guest speaker Terry Johnson from A & A Medical Supply brought a U-Step walking stabilizer for us to try. It is specifically designed for individuals with walking/gait issues or that have use of only one hand. It works the opposite of a standard walker in that you use the hand brake to walk and release it to stop. It's designed with a lower center of gravity and wraps around (like a "u") to provide more stability. You can go to www.ustep.com for more information. Terry also talked about Medicare and how it applies to purchasing needed equipment (walkers, scooters, power chairs, etc.)

Guest speaker Jill Cunnington,  occupational therapist for CareTenders, had great information regarding the challenges we all face on a daily basis. She was my in-home tharapist while I was recovering from my broken ankles and has helped make me stronger and safer in my home.

Don Tredent emailed us information regarding a new drug and trials that will begin in the fall from a company called Biohaven. You can read about it on their website: https://www.prweb.com/releases/2016/03/prweb13246650.htm.

There is also a Cerebellum and Ataxia Journal from Biomed Central which is an open access journal devoted to cerebellar research and disorders including scientific reports and clinical cases of numerous forms of ataxia. Search:cerebellumandataxias.biomedcentral.com.

Sue Kresnye and Jeff Mossbruger (new member) will be attending the NAF conference in Orlando, FL April 1-3 and will have much info to share when they return.

March meeting - Saturday March 12th

Hello All:
We are so excited to be getting together for our first support group meeting of 2016 this  Saturday March 12th  at the Garfield Hts library. We have lots of catching up to do and some really exciting news to share for the coming year.

We will have two guests: Terry Johnson from A&A Medical Supply demonstrating a new U-Step walker. I had an opportunity to use this during one of my therapy sessions. You will be impressed! It has many features specific to individuals with gait issues. Also Jill Hunnington, an occupational therapist, will be sharing her information and insights.

It will be great to see everyone again. Hope you can join us!

Carmen and Ginger Pieragastini