OPA Dance TEAM to perform at NEO Walk n' Roll to Cure Ataxia, OPA tickets to be auctioned

Join us at the beautiful Edgewater Park, Upper West Shelter Aug. 27, beginning at 10 a.m. for the 2017 Northeast Ohio Walk n' Roll to Cure Ataxia. 
Following the walk enjoy refreshments, socialize with other participants and bid on a some of the great auction items available - including an auction donation from Olmsted Performing Arts​ (OPA) - https://www.facebook.com/olmstedperformingarts/# - the OPA dance team will also be performing at the NEO Walk n' Roll to Cure Ataxia at 10:30 am during event registration, to start the day on an awesome note. Find out more about OPA at - http://www.olmstedperformingarts.com/

Flyer for this years event - Thanks Laura

Here is the final flyer for this years event.
Designed by Laura Ospanik sister of group member Laddy Ospanik.

Print it out and distribute it if you can.
Or we have some full color copies ready to distribute, to friends and local businesses and at your physical therapy places, etc.

Contact me if you need some flyers.
- Mike
mikey.hammer@gmail.com

Auction Fundraiser item from Playhouse Square

Join us at the beautiful Edgewater Park, Upper West Shelter Aug. 27, beginning at 10 a.m. for the 2017 Northeast Ohio Walk n' Roll to Cure Ataxia. 
Following the walk enjoy refreshments, socialize with other participants and bid on a some of the great auction items available - including an auction donation from Playhouse Square in downtown Cleveland - http://www.playhousesquare.org/

Meet the members of the National Ataxia Foundation, Northeast Ohio area support group - Ernie Green

Meet the members of the National Ataxia Foundation, Northeast Ohio area support group and the organizers of the 2017 Northeast Ohio Walk n’ Roll to Cure Ataxia. Find out who some of the people with Ataxia in Northeast Ohio are and find out the stories behind the disease and donate at http://www.ataxia.org/walk/NEOWalk to help them and others.

Below you can learn a little information about Ernie Green, a member of the National Ataxia Foundation Northeast Ohio support group.

My name is Ernest Green. I was born in Fall River, Massachusetts on May 3rd 1951. I retired at the age of 62 in May 2013, after 32 years of service with the Department of Defense. My career consisted of 14 years of military service and 18 years as an Information Technology Specialist (Networks); which included all subdivisions of computer management. I have been married to my spouse for over 45 years. We have two adult children and seven grandchildren ranging in age from 2 to 21. I was diagnosed with Machado-Joseph disease (MJD) otherwise called Spinocerebellar Ataxia Type 3 (SCA3), December of 2010.

Ataxia was a major factor in my decision to retire. Even though I was able to complete my daily routine assignments, retirement was not even a consideration. The day I decided to retire was the day I lost my balance and fell while holding my new grandchild in my arms. Since then, the battle with ataxia began.

When I wake up in the morning, the first thing I do is thank God for another day. Now comes the fun part, lying in bed with my legs feeling numb, wondering if this is the day I will not be able to stand and walk again. I struggle daily with the constant pain and weakness in my legs, hands and arms, balance control, walking, muscle contractions and neuropathy. I cannot open those plastic bags that meat or cheese comes in and my wife needs to button my shirts. So, how do I describe my day to day life – challenging!

But my positive outlook on life is based on my faith; “I live in the fullness of God.” And even though you may see me as being disabled; my God sees me as being perfect. That is what drives me to continue my daily fight to live. I believe in God our Father; I believe in Christ the Son; I believe in the Holy Spirit; Our God is three in one; I believe in his resurrection; He will rise again; I believe in life eternal; for I believe, in the name of Jesus. And one day I will run again and feel no pain. My inspiration to go on comes from the book written by John Ortberg: ‘When the game is over, it all goes in the box.’

If I had to choose a soundtrack that describes my life it would be; ‘Warriors’ by Phil Driscoll.

I inherited the genetic condition known as Machado-Joseph disease from my mother. Her mother (my grandmother) also had symptoms; she inherited the disease from her father (my great grandfather). He emigrated from the Azores in 1903 and passed away in 1915. There was no formal diagnosis back then based on DNA; but family members told stories of his lack of balance and inability to walk. His neighbors all thought he was drunk when he staggered home from work.
Researching Mother's family history revealed a common thread among her ancestors. Many had ataxia-related symptoms. We now suspect that this mutated gene has been passed from generation to generation. I've read that when a parent has children, 50% of those children are at risk of inheriting SCA3.

Mother passed away at the age of 85 in June 2011. She was wheel chair bound and had ataxia in both her hands and legs. Of her six children, three have been diagnosed with the Machado-Joseph disease. And I am one of them.

Ernie is participating in the 2017 Northeast Ohio Walk n’ Roll to Cure Ataxia this year, and you can donate on his behalf at -https://ataxia.donorpages.com/WalknRoll2017NEO…/ErnestGreen/

NEO Walk n’ Roll To Cure Ataxia Gets New Sponsors, Auction Items

NEO Walk n’ Roll To Cure Ataxia Gets New Sponsors, Auction Items
Hyland Software joins PLIDCO and MC Mobility as event sponsors and an autographed collectible guitar worth $2,000 has been added to the fundraising auction

CLEVELAND, OH – The Northeast Ohio Walk n’ Roll to Cure Ataxia will be Aug. 27 at Edgewater Park in Cleveland, Registration begins at 10 a.m. and the Walk n’ Roll will start at 11:30 a.m...

Hyland Software - https://www.hyland.com - of Westlake just became another sponsor of the event, which already has sponsorships from MC Mobility - https://www.mcmobilitysystems.com/wheelchair-vans-for-sale-in-cleveland-ohio/ - in Mentor and PLIDCO (the Pipe Line Development Company) - http://www.plidco.com - of Westlake.

The goal of the National Ataxia Foundation (NAF) Northeast Ohio area support group is to raise $20,000 to fight Ataxia with the 2017 Northeast Ohio (NEO) Walk n’ Roll to Cure Ataxia, and to raise awareness of Ataxia before International Ataxia Awareness Day (IAAD) on Sept. 25.

The 2016 NEO Walk n’ Roll to Cure Ataxia at a Cleveland Metroparks location in Parma and raised more than $12,000. More the 120 participants, supporters and families enjoyed the event.

The NEO Walk n’ Roll this year will include a performance from the Olmsted Performing Arts dance team, a chance to tour a handicap accessible van from MC Mobility, and information about the Americans with Disabilities Act from Beth Glas, executive vice president of Maximum Accessible Housing Ohio and a silent auction of 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, Planet Fitness, Trader Joe’s and more.

A $2,000 collectible autographed guitar signed by John Kay of SteppenWolf, Peter Noone of Herman’s Hermits and members of Sly and the Family Stone will also be auctioned off.

The NEO Walk n’ Roll to Cure Ataxia will be Sunday August 27 at the Cleveland Edgewater Park Upper Edgewater West Shelter, 6500 Cleveland Memorial Shoreway, Cleveland. Registration for the event begins at 10 a.m. and the Walk n’ Roll starts at 11:30 a.m., the auction will follow the Walk n’ Roll. All are invited to enjoy the day, the beautiful scenery, the picnic and walking areas, and support Ataxia and your local friends battling Ataxia. Participation in the Walk n’ Roll is free, but donations are encouraged.

Find out the complete details of the 2017 NEO Walk n’ Roll to Cure Ataxia and each sponsor and auction item available at https://www.facebook.com/NortheastOhioWalknRoll.

An estimated 150,000 individuals in the United States have Ataxia, a debilitating condition that is a rare and often fatal neurodegenerative disorder.  NAF Walk n’ Roll to Cure Ataxia events have grown nation-wide informing tens of thousands about Ataxia and raising more than $300,000 annually for research and important programs and services. The NAF and all the individual support groups - including the Northeast Ohio area support group - rely solely on donations and fundraising. 

For more information about Northeast Ohio Walk n’ Roll to Cure Ataxia and to register to participate, or give a donation, visit http://www.ataxia.org/walk/NEOWalk.

The NAF was established in 1957 as a 501(c) (3) nonprofit organization. All funds raised at the NEO Walk n’ Roll to Cure Ataxia go directly to NAF with no second or third party involvement.

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Almost 10% of the way to our goal

The 2017 Northeast Ohio Walk n' Roll to Cure Ataxia is only a month away. The fundraising goal is $20,000, and we are almost 10% of the way there. Follow the progress below, and make sure to register and donate.
https://ataxia.donorpages.com/WalknRoll2017NEOhio/stats

Meet the members of the National Ataxia Foundation, Northeast Ohio area support group - Jeff Mossbruger

Meet the members of the National Ataxia Foundation, Northeast Ohio area support group and the organizers of the 2017 Northeast Ohio Walk n’ Roll to Cure Ataxia. Find out who some of the people with Ataxia in Northeast Ohio are and find out the stories behind the disease and the National Ataxia Foundation Northeast Ohio area support group.

Below you can learn a little information about Jeff Mossbruger, a Cleveland Native who has become involved with the Northeast Ohio Walk n’ Roll to Cure Ataxia this year, and you can donate to him and his team at - https://ataxia.donorpages.com/WalknRoll2017NEOhio/JeffMossbruger/

What is your name?

My name is Jeff Mossbruger When and where were you born?

Was born in Cleveland in 1966. I grew up in Parma, Ohio. What do you do for a living?

I am on social security disability I was a taxidermist for over 20 years and worked in many fields of construction. Are you married and do you have children?

I have been married for almost 25 years and have 3 daughter's ages 28, 22, 18 When were you diagnosed with Ataxia? How and how has it changed your life?

I was diagnosed in 2015 Idiopathic Sporadic Cerebellar Ataxia. Still no known cause. It took away lot of my creative thinking something I was known for thinking outside the box, took away my driving privileges, I have serious cognitive issues, something like this email takes me a lot of time to do, need to come back several times over a few days. I still walk unassisted most times maybe little stubborn but do stumble and lose balance, been known to walk into a few walls. the worst part is i walk sometimes like I'm drunk and the looks sometimes i get leaving a concert, a restaurant, hurts sometimes. I stutter more than slurr and have a hard time finding words, lot of days by end of day it's really difficult to talk somedays almost lose the ability to do and i do still get frustrated. Think the hardest is on the good days people think your better and your illness is over, then next time you see them your having a bad day and you have to keep explaining what it is you have. Why did you become involved with the National Ataxia Foundation, Northeast Ohio area support group? Why and how are you helping with the NEO Walk n’ Roll to Cure Ataxia?

I first came in touch last year but backed out due to not being ready emotionally and still coming to terms and changes, then I came on this last month ready to go.

I'm trying to help by raising awareness, attending the walk n roll with family and friends and to assist organizers the best way I can, they are doing an amazing job! Have you done any other current and/or past charity volunteer work?

Yes I have been involved with numerous charity organizations, events, past sitting board positions and have a small 501c3 charity. Describe your day to day life in a few sentences.

My day to day varies depending on how I feel, but foremost I awake up everyday thinking positive, it's a new beginning. I may not control the day or how I feel but I can control my attitude. I still get up early every morning like I was going to work and do as much as I can, either chores around the house, light yard work anything that helps me to move around. What are your hobbies?

I like to fish, be outside and do as much as I can, gardening. What is your favorite quote and who is it by?

I care very little if i am judged by you or by any human court; indeed, I don't even judge myself. My conscience is clear, but that does not make innocent. It's the Lord who judges me. Therefore judge nothing before the appointed time; wait til the Lord comes. He will bring to light what is hidden in darkness and will expose the motives of men's hearts. At that time each will receive his praise from God. Please share your greatest life lesson.

A smile is everyone's language and everyone can understand, a simple smile can have a big impact. What is your philosophy on life?

To know that my path in life has already been laid out and I have to trust the things I cannot change, but even through my darkest times you still need to be there for someone who my be in a darker moment it's only then you can rise above and see the light and become a better person. What are your long-term personal and/or professional goals?

My long term goal is to be there for my family and fight this til the end! And hope my fight inspires others. Some words to describe me are self motivated, protective, willing to stand up for what I believe in. My wife is the most important person to me In five songs, what is the soundtrack of your life?

Soulshine & ain't wasting time no more (Allman brother's) ain't no sunshine (Bill Whithers) Three little birds (Bob Marley) family tradition (Hank Williams jr.) My Grand Goal is to move and live in Maui and swim everyday with the turtles. What do you wish people would know, believe, and do?

That love can change everything, don't be quick to judge, respect those who may be different and that if we really wanted to we could live in peace.