Newsletter February 2022

  • New member AGI Steering Committee
  • Partnership with SCAsource
  • Webinar series
    • WG6 Next-generation genomics and platforms: recording available
    • WG1 Clinical outcome assessments and registries: 22 February 2022
  • Reminders

New member AGI Steering Committee

The AGI Steering Committee (SC) is happy to welcome Dr. Rosalind Chuang as a new member. She is the first SC member from an industry partner. We are looking forward to working with her in the coming years. We would like to introduce her to you below:
Dr. Rosalind Chuang is movement disorders neurologist who is currently a Medical Director in Early Clinical Development, Neurodegeneration Unit at Biogen. She has longstanding research and clinical interest in ataxia, first serving as the director of the Stanford University’s Multi-Disciplinary Huntington’s Disease and Ataxia Clinic and subsequently seeing complex movement disorders in a tertiary care hospital in Seattle, WA. Since joining Biogen in in September 2020, she has collaborated with AGI members and other industry members on clinical trial endpoint development. She is also an active participating member of NAF and International Movement Disorders Society. She is excited to join AGI to improve research and clinical trials in underrepresented groups and regions, and to promote data sharing amongst research and industry partners.

In our next newsletter, we will introduce another new member of the AGI Steering Committee.

Partnership SCAsource

AGI has entered into a partnership with SCAsource, a website where research on ataxias is written in plain language by scientists. The goal of SCAsource is to make research more readily accessible and understandable to ataxia patients and families.
SCAsource is entirely run by volunteers, primarily graduate students and post-doctoral fellows. Project coordinators are Celeste Suart and Dr. Hayley McLoughlin.
AGI aims to contribute to the goals of SCAsource, and invites you to contribute to this website as a volunteer writer or translator. You can find more information about this process here.

Additionally, SCAsource is looking for ataxia research labs to be profiled on their website. Start the process of having a profile written about your lab by filling out this form.

Webinar series

In the first webinar series of the Ataxia Global Young Investigator Initiative, each AGI Working Group will present an introduction into their topic.

Did you miss our webinar on Tuesday 18 January? It is now availabe to watch on YouTube!
AGI webinar series - WG1
Next up: WG1 on Clinical Outcome Assessments and Registries will introduce and present a standard clinical assessment program for ataxia studies. Focus will be on the discussion of the strengths and weaknesses of available clinical scales. The seminar will provide an outlook of further development of scales and their use in upcoming clinical trials.

More information on our website or register via the link below.
Upcoming webinars (click on the title to register):

Tuesday 29 March, 9.00 CEST: WG4 'Digital-motor biomarkers'
Digital-motor biomarkers in ataxia: introduction and overview across motor domains

Tuesday 17 May, 17.00 CEST: WG2 'Molecular biomarkers and biosampling'
Biomarkers for trial readiness in ataxia


Become an AGI member or partner!
The application for membership and partnership of the AGI is now open on our website. More information about membership and partnership can be found in our charter.
As a member, you can nominate and vote for new members for the AGI Steering Committee, and you will get an invitation for the business meeting during the Ataxia Global Conference.

Note that everyone who is part of an AGI Working Group should apply for AGI membership before June 2022!
Ataxia Global Conference
The AGI Steering Committee has decided to postpone the AGI Conference 2022 that was planned for March 2022. We plan to hold this meeting in person later in 2022, in conjunction with ICAR.
We will of course keep you informed of any updates to the plans for this meeting.
Join a Working Group
Would you like to join an AGI Working Group? Please fill out the survey using the link below to provide us with your information.
Submit your project proposal
AGI projects are projects proposed by AGI members and endorsed by the Steering Committee. The next deadline for project proposals is 15 June 2022. Find more information on our website.

Contact us

Questions? Items for the next newsletter? Don't hesitate to contact us!

Ataxia Global Initiative Office Tübingen
Holm Graessner, Birte Zurek, and Annemarie Post

All previous AGI newsletters can be found here.
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