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.

##

Friday, September 1, 2017

The 2017 Northeast Ohio Walk n' Roll to Cure Ataxia raised more than $13,000


The 2017 Northeast Ohio Walk n' Roll to Cure Ataxia raised more than $13,000 for research and services from the National Ataxia Foundation. 
The NEO Walk n' Roll was attended by about 145 people and we had auction items, a DJ (DJ EZ), dancers from the Olmsted Performing Arts, a guest speaker - Beth Glas with Maximum Accessible Housing of Ohio - and we went for a fantastic walk n' roll through Edgewater Park enjoying the park and overlooking sparkling Lake Erie on a picture perfect day. It was a wonderful time. Thank you to all who attended, donated, supported and were involved with the event.

Monday, August 28, 2017

Friday, August 25, 2017

Thank you Bronze Sponsors - Keep Donating, Sunday is the day

Thank you to our individual sponsors - Hillary Taylor (Bronze Sponsor) Laura Ospanik (Bronze Sponsor) and Patt Denihan (Bronze Sponsor) - and keep the donations coming in. We are getting close to reaching our goal. All money donated goes toward finding a Cure for Ataxia.
Keep the donations rolling in at - http://www.ataxia.org/walk/NEOWalk
And join us Sunday at Edgewater Park Upper West Shelter, to donate then and bid on auction items and socialize and support and raise awareness for Ataxia.

Thursday, August 24, 2017

Single Barrel Jack Daniels engraved bottle with two glasses will be auctioned off at NEO Walk n' Roll to Cure Ataxia


Join us at the beautiful Edgewater Park, Upper West Shelter THIS SUNDAY, 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 a Single Barrel Jack Daniels engraved bottle with two glasses.

Wednesday, August 23, 2017

Browns, Cavaliers, Monsters and Captains, oh my... sounds like time to bid on great sport prizes at the NEO Walk n' Roll to Cure Ataxia





Browns, Cavaliers, Monsters and Captains, oh my... sounds like time to bid on great sport prizes.
Join us at the beautiful Edgewater Park, Upper West Shelter the Sunday, 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 autographed 8.5 inch x 11 inch glossy photo of Cleveland Browns quarterback Cody Kessler;
an authentic Kay Felder signed jersey from the Cleveland Cavaliers;
tickets,
a t-shirt and a Joe Haden "Browns Night at the Monsters" bobblehead from the Lake Erie Monsters;
and tickets to a Lake County Captains baseball game
http://www.clevelandbrowns.com/
http://www.nba.com/cavaliers/
https://www.monstersteamshop.com/
http://www.milb.com/index.jsp?sid=t437

Tuesday, August 22, 2017

Cabin Restaurant gives auction prize to bid on at the NEO Walk n' Roll Sunday

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 gift certificates from The Cabin restaurant in Willowick - http://www.thecabinofwillowick.com/

Monday, August 21, 2017

We NEED your help to reach the fundraising goal

We NEED your help to reach the fundraising goal for the 2017 NEO Walk n' Roll to Cure Ataxia. The 2017 NEO Walk n' Roll to Cure Ataxia is Sunday but we haven't made it to the goal yet, Please help.
Keep the donations rolling in at - http://www.ataxia.org/walk/NEOWalk

And see you at the walk on Sunday at Edgewater Park in Cleveland, Upper West Shelter.
We are gonna have a great time, make friends, socialize with old friends, bid on wonderful auction items and fight Ataxia.

Bid on a prize package from Planet Fitness at the NEO Walk n' Roll to Cure Ataxia Sunday

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 a gift certificate and other items from Planet Fitness -http://www.planetfitness.com/

Saturday, August 19, 2017

Read the bio of the founder of the National Ataxia Foundation Northeast Ohio area support group and the man who started the Northeast Ohio Walk n' Roll to Cure Ataxia, Carmen Pieragastini.


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. Below is a bio of the founder of the National Ataxia Foundation Northeast Ohio area support group and the man who started the Northeast Ohio Walk n' Roll to Cure Ataxia, Carmen Pieragastini.
Donate to the 2017 Northeast Ohio Walk n' Roll through Carmen at - https://ataxia.donorpages.com/WalknRoll2017NEOh…/TEAMCARMEN/
Carmen has more than 45 years of business experience, mostly in various management capacities. He is married for 35 years to his wife, Virginia, and has 2 grown sons. He was diagnosed with Ataxia 15 years ago. His mother had it and died when she was 83 (cause unknown). His type of Ataxia is not specified (there has been gene testing). He founded the NAF Northeastern Ohio chapter in 2014, mainly to provide a vehicle for the afflicted, care-givers and family with a place to go to receive information, and support, etc. So little is known about Ataxia and there are multiple types. Research is making great strides in finding treatment and even a cure. Awareness and research dollars are the most vital needs at present.

Friday, August 18, 2017

Fount leather tote bag will be on auction at the 2017 NEO Walk n' Roll to Cure Ataxia


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 a leather tote, dust bag, signature leather tassel and leather cream donated by Fount Leather Goods - http://fountleather.com and https://www.facebook.com/fountleathergoods

Thursday, August 17, 2017

Guitar signed by John Kay, Peter Noon and the Family Stone available at 2017 NEO Walk n' Roll to Cure Ataxia


We will be auctioning off a Collectible guitar signed by John Kay of Steppenwolf, Peter Noone of Herman’s Hermits and Sly and the Family Stone.
The guitar was signed after the 2014 Moondog Coronation Ball in Cleveland Ohio.
The guitar, with all the signatures, is easily worth $2,000 but will be auctioned off to the highest bidder at the 2017 Northeast Ohio Walk n’ Roll to Cure Ataxia in Cleveland Ohio at Edgewater Park on Aug. 27.
The signed guitar could be auctioned for as little as $250,00, depending on the amount of bidders. The signatures on the guitar are in perfect condition, the guitar has been well taken care of by an organizer of the 2014 event.
If you are interested in bidding on this classic collectible guitar with famous, rare and real signatures from these wonderful stars and great rockers, please attend the 2017 Northeast Ohio Walk n’ Roll to Cure Ataxia or find out more about the event at - http://www.ataxia.org/walk/NEOWalk

Wednesday, August 16, 2017

Auction donation from The Rock 'n' Roll Hall of Fame available at the 2017 NEO Walk n' Roll to Cure Ataxia


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 The Rock 'n' Roll Hall of Fame - https://www.rockhall.com/

Monday, August 14, 2017

Lush and Lovely Floristry has donated items for auction at the NEO Walk n' Roll to Cure Ataxia


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 a workshop girt certificate from Lush and Lovely Floristry - https://lushandlovelyfloristry.com/

Friday, August 11, 2017

Meet the members of the National Ataxia Foundation, Northeast Ohio area support group - Jonathon Jamoral


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 Jonathon Jamoral. He is an active member trying to raise Ataxia awareness. You can visit his Northeast Ohio Walk n' Roll to Cure Ataxia page and donate on his behalf to support the walk at https://ataxia.donorpages.com/WalknRoll201…/JonathanJamoral/
What is your name?
Jonathan David Jamoral-Hsia
When and where were you born?
I was born on February 6, 1994 in the Philippines.
What do you do for a living?
I work as a prep. cook at Western Reserve Academy in Hudson, OH.
Are you married and do you have children?
No.
When were you diagnosed with Ataxia? How and how has it changed your life?
I was officially diagnosed by my neurologist in 2015; but my family, friends, and I noticed a severe change affecting me when I hit puberty age (14-15). It has not affected my day to day life that much, I still go to work everyday, granted I take everything alot slower when i move (I also got a Rollator walker to help me with my mobility). But don't get me wrong, I do not let my disability stop me. My family and I accompanied some friends to a trip to visit Yellowstone, Badlands, and Grand Tetons last year.
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 got involved after my doctor diagnosed me with Ataxia. My family and I thought it would be a good idea to meet other people with the same dissability as me. It would also be a good way to socialize and make friends. I am helping out with the Walk and Roll because it would raise awareness to Ataxia, a serious dissability that doesn't get as much awareness.
Have you done any other current and/or past charity volunteer work?
I try to help out with volunteering as much as I can.
What ia a fun fact about you?
I love to try to experiment with cooking ingredients at home. I also like to cook for my friends and family while at home. I also play video games during my free time.

Wednesday, August 9, 2017

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

Monday, August 7, 2017

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/

Friday, August 4, 2017

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/


Thursday, August 3, 2017

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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Friday, July 28, 2017

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


Thursday, July 27, 2017

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.



Tuesday, July 25, 2017

Get Excited for the 2017 NEO Walk n' Roll to Cure Ataxia - this is what the shirts will look like

This year the National Ataxia Foundation has 2 sponsors ( Biohaven Pharmaceuticals - http://biohavenpharma.com/ - and Reata Pharmaceuticals - https://reatapharma.com/ ) who are sponsoring every Walk n' Roll to Cure Ataxia across and they are providing free t-shirts to Walk n' Roll participants. Everyone who attends the Northeast Ohio Walk n' Roll to Cure Ataxia Aug. 27 at Edgewater Park in Cleveland - https://www.clevelandmetroparks.com/parks/visit/parks/lakefront-reservation/upper-edgewater-shelter-west-half - will receive one of these event t-shirts, while supplies last. Save the Date - Aug. 27th - and register to attend the Northeast Ohio Walk n' Roll to Cure Ataxia now at http://www.ataxia.org/walk/NEOWalk




Friday, July 21, 2017

Ataxia monthly meeting on Tuesday July 25 2017

Hello everyone!

Our next meeting will be next Tuesday July 25 2017 at 130pm at the Edgewater park Upper Reserved Shelter. It will be a nice first look at the walk n roll site and a good place to make our plans.
Everyone is invited and  can get the opportunity to learn about the walk n roll planning so far.
Everyone is welcome to bring lunch and a drink for themselves.

see you there
julie clarich




Save The Date - The 2017 Northeast Ohio Walk n' Roll to Cure Ataxia will be at Edgewater Park in Cleveland Ohio on Aug. 27, 2017

Thursday, July 20, 2017

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

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.
What is your name?
Mike Hammer
When and where were you born?
Pittsburgh, 1977
What do you do for a living?
Disability and freelance marketing and writing
Are you married and do you have children?
No I am not married and do not have children
When were you diagnosed with Ataxia? How and how has it changed your life?
I have had Ataxia since birth, I was diagnosed when about 4. It always affected me a little, made me trip and fall more, but in college is when I noticed more major problems walking. I began using a cane to walk about 10 years ago and will need a wheelchair soon
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 was on the National Ataxia Foundation e-mail list and found out about the Northeast Ohio group that Carmen started at the very beginning and was at one of the first meetings.
Have you done any other current and/or past charity volunteer work?
I have volunteered time to help some local arts and education organizations and nonprofits with publicity and marketing in the past.
Name one fun fact about yourself.
I used to host a college radio show called HAM RADIO

Tuesday, July 18, 2017

Pics from Honey Hut in Brunswick, FUNraising

Tonight at the Honey Hut in Brunswick, FUNraising for the 2017 Northeast Ohio Walk n' Roll to Cure Ataxia.
National Ataxia Foundation Northeast Ohio support group co-leader Julie Clarich and her kids.








Tuesday, July 11, 2017

We are just one week away from the first 2017 NEO Walk n' Roll to Cure Ataxia fundraiser

We are just one week away from the first 2017 NEO Walk n' Roll to Cure Ataxia fundraiser Visit the Honey Hut location in Brunswick on July 18 from 5–7 p.m. and say you are with the NEO Walk n' Roll to Cure Ataxia and present the FUNraising flyer and they will donate 20% of their sales to the NEO Walk n' Roll to Cure Ataxia. Print Out the Honey Hut Fundraiser flyer below and you can get directions to the Honey Hut in Brunswick at http://www.honeyhut.com/brunswick/

Print Out the Honey Hut Fundraiser to present when you go to the Honey Hut on the Fundraiser days