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Newsletter September 2022
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- Ataxia Global Conference 2022
- ICAR
- Advisory Committee for Therapeutics (ACT): Call for applications
- AGI Tools & Methods studio series
- AGI Webinars
- Webinar on CACNA1A-related disorders
- SCAsource
- Reminders
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The conference will take place on Friday and Saturday 4-5 November 2022 at Renaissance Dallas Addison Hotel in Dallas, TX, USA (hybrid), directly following the ICAR (s. below). The Ataxia Global Conference brings together academia, industry as well as patient advocacy organizations and will focus on trial-readiness for ataxias.
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- Activities of Daily Living (Christian Rummey)
- Remote disease specific movement monitoring (Lisa Alcock)
- Developing mutation-customized ASOs for ultra-rare and private ataxias (Willeke van Roon)
- Genetic therapy approaches for neurodegenerative brain diseases and tackling the delivery challenge: the example of genetic FTD (Chris Shaw)
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A preliminary program of the Ataxia Global Conference 2022 is available here. More information can be found here.
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Note that registration is needed for both onsite and online attendance.
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The International Congress for Ataxia Research (ICAR) takes place just before the Ataxia Global Conference 2022. Delegates may be interested in attending both conferences as the programs are distinct and complimentary to each other.
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Advisory Committee for Therapeutics:
Call for applications
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The AGI is currently implementing an Ataxia Advisory Committee for Therapeutics (Ataxia-ACT), similar to the Treat-NMD ACT, to optimise the planning and execution of early stage and later phase clinical research on (all forms of) ataxias.
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The main objective is to provide a valuable resource and service to the ataxia community by giving transparent, unbiased, multi-stakeholder and multidisciplinary expert advice to optimise research, by either a) steering studies along a realistic and well-informed plan to clinical trial/later phase clinical activity or b) encouraging a change of direction or approach, to avoid failure further down the line.
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The first Ataxia-ACT meeting is being planned for December this year.
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If you wish to submit an application to be reviewed by the Ataxia-ACT, please contact Holm Graessner (AGI office) for further information and for the Ataxia-ACT pre-application form.
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AGI Tools & Methods studio series
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The goal of the new AGI Tools & Methods studio is to discuss and to improve trial-readiness methods with regard to their novel (or improved) application in the ataxia field.
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The first Tools & Methods studio series took place in July 2022:
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Longitudinal progression modelling of COAs in ataxia – differential value vs. limitations of change models, slope models, and disease course mapping, exemplified for degenerative ataxias.
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We thank our speakers Sophie Tezenas du Montcel, Dieter Hilgers, and Christian Rummey as well as our participants for the fruitful discussions!
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They have all been recorded and made available on our website.
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All AGI working groups and individual members are warmly invited to propose topics (and also host) future Tools & Methods studios as well!
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Missed one of our previous webinars on various #ataxia research topics? They have all been recorded. Visit our website for the overview.
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Webinar on CACNA1A-related disorders
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Title: “CACNA1A-related disorders: clinical presentation and therapeutic options.”
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Speaker: Elisabetta Indelicato, Medical University Innsbruck, Austria
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4.Okt. 2022 03:00 PM (CEST)
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Educational webinars on rare neurological, neuromuscular and movement disorders jointly organized by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).
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SCAsource joined National Ataxia Foundation in July 2022. Visit their new website here.
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SCAsource is a website where research on SCAs and related ataxias is written in plain language by SCA scientists.
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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
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Additionally, SCAsource is looking for ataxia research labs and working groups to be profiled on their website. Start the process of having a profile written about your lab by filling out this form.
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Become an AGI member or partner!
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The application for membership (as individual) and partnership (as organization) of the AGI is now open on our website. More information about membership and partnership can be found in our charter.
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As a member, you can nominate and vote for new members for the AGI Steering Committee, and attend our business meetings.
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Would you like to join an AGI Working Group? Please fill out the survey using the link below to provide us with your information.
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