2019 NEO Walk n' Roll to Cure Ataxia planning call

Hi everyone:

Time to shake off those winter blahs and think sunny thoughts! We are planning a conference call so we can begin discussions about this year's Northeast Ohio (NEO) Walk n' Roll, which is scheduled for Sept. 22nd 2019. If you would like to be involved in helping to organize the 2019 Northeast Ohio Walk n' Roll to Cure Ataxia let me know when you are available in the next two weeks (day/evening) for a conference call. Whether you are in Northeast Ohio or not we would love to have your help, advice, and promotion of the event in your area. We would really like some help in organizing and planning the 2019 NEO Walk n' Roll to Cure Ataxia.

You can e-mail me at mikey.hammer@gmail.com to help us organize this event. Thanks,

Mike

Cleveland Area Ataxia Fundraising event

Cleveland Area Ataxia Fundraising event

Jeff Mossbruger, member of the National Ataxia Foundation Northeast Ohio support group, organized a fundraiser in March that raised $350.00 for the National Ataxia Foundation. The fundraising event, called MARCHarita, was a tropical themed night which featured a DJ, steel drums, Polynesian dancers, Caribbean food and various items raffled off. The fundraiser took place at at Brennan’s Catering & Banquet Center. Money raised at MARCHarita was donated to support area groups and individuals with Ataxia, ALS and MS. Event Sponsors included Foster’s Meats Westside Market, Ross Wine & Liquor, Sibling Revelry Brewing, Hyland Software, PNC Bank, Rock and Roll City Mattress, and Pearle Vision in Rocky River.
Mossbruger is also working with Phastar, Davis Aerospace and Maritime School, along with West River Paddling Co., to develop and adaptive paddle board to allow disabled individuals to use a paddle board on the water. And future information about that project can be found at https://www.facebook.com/Marcharita-For-A-Cause-333779974069466/ .

MARCHarita For A Cause is Only One Month Away

FYI

some of the members of the National Ataxia Foundation Northeast Ohio Ataxia Support group are organizing and attending this event

event organizers need to sell about 50 more tickets, so attend the event if you can

MARCHarita For A Cause is Only One Month Away

TROPICAL-THEMED PARTY WILL RAISE MONEY AND AWARENESS FOR NORTHEAST OHIOANS SUFFERING FROM NEUROMUSCULAR DISORDERS

CLEVELAND – Join us on March 2nd for MARCHarita - a hot event in cold Cleveland that will raise awareness and aid for those who suffer from Ataxia, ALS and MS. Forget about the cold and snow, put on your flip flops and Hawaiian shirts, enjoy some great food and win some fantastic prizes at a fundraising event organized by Cleveland Rocks 4 Charity at Brennan’s Catering & Banquet Center on Triskett Rd.

MARCHarita For A Cause - www.marcharitaforacause.org - will feature a unique blend of tropical fun – including live steel drum music and DJing by Scott Sapata as well as authentic Polynesian dance from Manivic’s Dance Company – raffles for dozens of prizes and a tasty spread of food for all attendees.

“We are hosting MARCHarita to raise awareness, to provide medical assistance and improve the quality of life for people right here in Northeast Ohio who suffer from Ataxia, ALS and MS,” says Jeff Mossbruger, from Cleveland Rocks 4 Charity.

Cleveland Rocks 4 Charity is a registed 501 (c) 3 Cleveland-based charity that has organized events to help non-profit organizations and sick and disabled individuals for more than a decade. Money raised at MARCHarita will be donated to support area groups and individuals with Ataxia, ALS and MS. Even though the diseases are different they share some symptoms and outcomes. Find out more information about these conditions and purchase tickets to MARCHarita at www.marcharitaforacause.org. Tickets to the event are $50 and must be purchased in advance.

Attendees will enjoy fresh fruit and salad bars, roasted jerk chicken and island rice dishes, sweet and sour pork loin and Key Largo vegetable stations as well as shrimp and baked potato bars. There will also be margarita, wine, tequila and beer tastings. Event Sponsors include Foster’s Meats Westside Market, Ross Wine & Liquor, Sibling Revelry Brewing, Hyland Software, PNC Bank, Rock and Roll City Mattress, Pearle Vision in Rocky River, Seven Brothers Distillery and more.

Organizers are also working with Phastar, Davis Aerospace and Maritime School, along with West River Paddling Co., to develop and adaptive paddle board to allow disabled individuals to use a paddle board on the water.

For more information on MARCHarita interested parties can contact Mossbruger at (440) 617-9665 or clevelandrocks4charity@gmail.com or Ginger Pieragastini from the National Ataxia Foundation, Northeast Ohio Ataxia Support Group at (440) 220-0697 or vpieragastini@gmail.com.

MARCHarita For A Cause To Raise Money and Awareness for Northeast Ohioans Suffering from Neuromuscular Disorders

FYI
some of our group members are organizing and attending this event

MARCHarita For A Cause To Raise Money and Awareness for Northeast Ohioans Suffering from Neuromuscular Disorders

THE TROPICAL THEMED PARTY WILL FEATURE DELICIOUS FOOD, WONDERFUL ENTERTAINMENT, GREAT PRIZES AND MORE

CLEVELAND – Join us on March 2nd for MARCHarita - a hot event in cold Cleveland that will raise awareness and aid for those who suffer from Ataxia, ALS and MS. Forget about the cold and snow, put on your flip flops and Hawaiian shirts, enjoy some great food and win some fantastic prizes at a fundraising event organized by Cleveland Rocks 4 Charity at Brennan’s Catering & Banquet Center on Triskett Rd.

MARCHarita For A Cause - www.marcharitaforacause.org - will feature a unique blend of tropical fun – including live steel drum music and DJing by Scott Sapata as well as authentic Polynesian dance from Manivic’s Dance Company – raffles for dozens of prizes and a tasty spread of food for all attendees.

“We are hosting MARCHarita to raise awareness, to provide medical assistance and improve the quality of life for people right here in Northeast Ohio who suffer from Ataxia, ALS and MS,” says Jeff Mossbruger, from Cleveland Rocks 4 Charity.

Cleveland Rocks 4 Charity is a registed 501 (c) 3 Cleveland-based charity that has organized events to help non-profit organizations and sick and disabled individuals for more than a decade. Money raised at MARCHarita will be donated to support area groups and individuals with Ataxia, ALS and MS. Even though the diseases are different they share some symptoms and outcomes. Find out more information about these conditions and purchase tickets to MARCHarita at www.marcharitaforacause.org. Tickets to the event are $50 and must be purchased in advance.

Attendees will enjoy fresh fruit and salad bars, roasted jerk chicken and island rice dishes, sweet and sour pork loin and Key Largo vegetable stations as well as shrimp and baked potato bars. There will also be margarita, wine, tequila and beer tastings. Event Sponsors include Foster’s Meats Westside Market, Ross Wine & Liquor, Sibling Revelry Brewing, Hyland Software, PNC Bank, Rock and Roll City Mattress, Pearle Vision in Rocky River and more. 
Organizers are also working with Phastar, Davis Aerospace and Maritime School, along with West River Paddling Co., to develop and adaptive paddle board to allow disabled individuals to use a paddle board on the water.
For more information on MARCHarita interested parties can contact Mossbruger at (440) 617-9665 or clevelandrocks4charity@gmail.com or Ginger Pieragastini from the National Ataxia Foundation, Northeast Ohio Ataxia Support Group at (440) 220-0697 or vpieragastini@gmail.com.

Study for Spinocerebellar ataxia types 1 and 3 (READISCA)

Hello all, the following message, and the attached flyer, was sent by the National Ataxia Foundation to area support groups. It is about a research study for SCA 1 and SCA 3 that is looking for participants.

"This message is being sent on behalf of Sue Hagen regarding an important research project that is enrolling SCA 1 and SCA 3 participants. The email below is from the study Coordinator from Dr. Tetsuo Ashizawa’s institute.
-----
Message from Dr. Ashizawa:

We are currently enrolling patients for an NIH funded clinical trial readiness study for Spinocerebellar ataxia types 1 and 3 (READISCA). We have 17 sites across the United States.

The READISCA study is non-interventional, however the data collected is extremely useful for designing effective future drug/intervention trials. Consequently, the overall aim of the study is to bridge the gap between what is currently known about SCA1/3 and what we need to know to design effective trials.

The study is enriched with the incorporation of biomarkers and imaging modalities in addition to clinical assessments at no cost to the patient.

There are also a few disease modifying therapies in the pipeline for human testing in about 3-5 years (MSK 1 inhibitors, citalopram, nucleotide based gene silencing, etc.) which would rely on the data gathered from the READISCA study.

We will be inviting participants who are early stage (based on SARA score), premanifest carriers and 50% @ risk family members. For more information about the study visit https://clinicaltrials.gov/ct2/show/NCT03487367

In addition to the contact information listed on the flyer, potential interests may also reach out to additional contacts below over the holidays:

Raven Bailey
rbailey@houstonmethodist.org
346-238-5215

Chantel Potvin
cpotvin@houstonmethodist.org
713-363-7394

Titilayo Olubajo M.S.M, CCRP
tolubajo@houstonmethodist.org
713-363-9803

Kind Regards,
Titilayo Olubajo, M.S.M, CCRP
Clinical Research Coordinator
Houston Methodist Neurological Institute/Movement disorders clinic
Houston Methodist Research Institute
6560 Fannin St. Suite 1002
Houston, TX 77030
Email: tolubajo@houstonmethodist.org
Office Phone: 713-363-9803

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.

Connections newsletter

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

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

Cincinnati Children’s Hospital Medical Center Movement Disorder Clinic - https://www.cincinnatichildrens.org/service/m/movement

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