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.
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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