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/

IAAD dinner at Cabin of Willowick, Sept 25th at 6:30 pm

There will be a social dinner outing Sept 25th at The Cabin of Willowick - http://www.thecabinofwillowick.com -  at 6:30 p.m.
Everyone is invited to join us.
Ask for the National Ataxia Foundation group when you get to The Cabin of Willowick.

Northeast Ohio area, National Ataxia Foundation, teleconference meeting recap

Hello All:

Thank you to everyone who was able to join us on our call Wednesday evening.  

It is always great to have open dialog and share information. There is always something new to learn!

Julie Clarich reviewed the success of our most recent Walk n' Roll to Cure Ataxia at Lakewood Park and asked for feedback on what people liked or suggestions they may have for future events. One suggestion was that we would include speakers. If you have any other suggestions, please let us know. We strive to be inclusive and your input will help our events be more successful. 

We asked for ideas on future fundraising. One suggestion was to hold an indoor event during the winter (Feb/Mar). Another idea was to have an actual outdoor marathon in the Spring. This type of event should be sponsored and supported by local corporations/businesses who would assist in developing teams. Participants would pay a registration fee. It would take a lot of planning. Ginger is going to find out more about a local company that will manage the entire process and what their fee would be. We also talked about random one time events at local establishments like pizza places or bars who would split their proceeds for the night with us. Please share any ideas you may have!

Mike Hammer reminded everyone about our dinner outing on Sep. 25th in honor of International Ataxia Awareness Day. We will be meeting at The Cabin of Willowick Restaurant in Willowick, OH (28810 Lakeshore Blvd, Willowick, OH 44095 - http://www.thecabinofwillowick.com) at 6:30 pm. Everyone is invited. Just ask for the National Ataxia Foundation group. Hope you can join us!

Ginger Pieragastini shared information about the National Conference in Philadelphia this past April and reminded everyone that the 2019 conference is being held in Las Vegas at the Flamingo Hotel and Casino on March 29/30. Please check the NAF website and our Facebook page - https://www.facebook.com/NortheastOhioWalknRoll - for more information.

Carmen Pieragastini had an update on neurologists in Ohio that are listed with NAF. The list is being sent in a separate e-mail and will be posted on the Northeast Ohio area support group website -  http://ataxiafoundationcleveland.blogspot.com/

Hope to see you at the IAAD dinner on Sep. 25th!

National Ataxia Foundation Northeast Ohio area support group: Teleconference Meeting, Wednesday June 12

National Ataxia Foundation Northeast Ohio area support group: Teleconference Meeting, Wednesday June 12: Hello All!! The next National Ataxia Foundation, Northeast Ohio area support group meeting will be a TELECONFERENCE MEETING through http:...

Teleconference Meeting, Wednesday June 12

Hello All!!

The next National Ataxia Foundation, Northeast Ohio area support group meeting will be a TELECONFERENCE MEETING throughhttp://www.freeteleconference.com on Wednesday, Sept. 12th at 6:30 p.m.. We will discuss the upcoming International Ataxia Awareness Day (IAAD) dinner outing and the awesome 2018 NEO Walk n' Roll to Cure Ataxia which took place at Lakewood Park last month