New Opportunities

Dear Members,


Happy Spring! 

I hope you all are doing well. I just wanted to provide a couple updates and share about a few opportunities.

Dr. Gomez's laboratory is busy analyzing the SCA6 questionnaires that so many of you have participated in, thank you.

His lab already has a couple publications just this year in PubMed:

Longitudinal Changes in Patient- and Clinical-Reported Outcomes in Early Spinocerebellar Ataxia Types 1, 2, 3, and 6 from the IDEA Study

Jan 2025: Describes how certain patient reported outcome measures can measure changes after 2 years, but that more sensitive measures of change are still needed to measure change over shorter lengths of time.

Reliability of remote video ratings of the scale for assessment and rating of ataxia

March 2025: Describes how assessment of SARA (Scale for Assessment and Rating of Ataxia) can be performed accurately by video. This is good news for those of you who want to get a SARA assessment but find travel challenging. It also might help with trial accrual that uses SARA assessment. People might be more willing to participate if they can get their SARA evaluations remotely and perhaps it can be performed more frequently.

New opportunities:
Dr. Susan Perlman will have a Q&A question about ataxia in general on Friday with info about it and registration at this link: https://www.ataxia.org/event/ask-the-ataxia-expert-10/

Dr. Will Saban, PhD, from Tel Aviv University requested that I share with the SCA6 Network about the opportunity to participate in research to understand the impact of SCA6 on psychological, cognitive, and emotional processes. If you would like to participate, please click hereMore info below.

I hope you all are finding some time to get outside and enjoy all that nature has to offer! The weather here in FL is absolutely gorgeous!

Best,
Terry



 



Dr. Saban's study:

Title

Opportunity to participate in SCA6 research from home, Center for Accessible Neuropsychology, Faculty of Medicine, and Harvard University

 

Body

The Center for Accessible Neuropsychology is conducting online research for people with SCA6. The aim of the research is to understand the impact of SCA6 on psychological, cognitive, and emotional processes. The research is online and will be conducted from your personal computer or phone at a time convenient for you. In addition, participants will be able to receive feedback on their performance.

 

If you are interested in learning more about the research, click here.

If you would like to participate, please click here.

 

If you have any further questions, you can contact my student, Brooke Chasalow, directly at +1(917) 805 1658 on WhatsApp or at can@tauex.tau.ac.il

 

Thank you very much and have a pleasant day,

 

---------------------

Will Saban, Ph.D.
Faculty of Medical & Health Sciences, Department of OT, 

Goldschleger Eye Research Institute at Sheba Tel-HaShomer Medical Centre,

The Samueli Initiative for Responsible AI in Medicine,

Sagol School of Neuroscience,

Tel Aviv University,

CAN

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