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Newsletter April 2026
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- AGI Ataxia Expert Masterclass
- AGI 1st Regional Conference: Latin America
- AGI Industry Meeting
- Join AGI Trial Site Registry
- NAF/AGI Ataxia Resource Database
- NAF's Clinical Research Consortium for the Study of Cerebellar Ataxia (CRC-SCA)
- ICAR 2026
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1. AGI Ataxia Expert Masterclass
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The Ataxia Global Initiative is inviting you to register for the 1st AGI Ataxia Expert Masterclass, which will take place online from 21-23 April 2026, entitled:
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Genetics, Disease Mechanisms, and Trial Readiness in SCAs
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With a focus on Spinocerebellar Ataxias (SCAs), the masterclass will bring together leading international experts to address key topics in clinical trial readiness.
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Outcomes – Clinical and Digital
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Outcomes – Imaging and Molecular
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This masterclass is designed for clinicians and basic researchers working in ataxias. It assumes prior foundational knowledge of ataxia characteristics, such as that gained through NAF/MDS training or comparable clinical or research experience.
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The AGI operates on a not-for-profit basis and relies on participation fees from industry members to cover operating expenses (€1.500). Non-industry participants may register free of charge.
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2. AGI Regional Conferences:
Latin America
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We are pleased to announce the first AGI Regional Conference, taking place online on 7 May 2026, with a dedicated focus on Latin American countries.
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The conference will give a concise overview of current research and care in the region and provide an opportunity to exchange ideas and strengthen collaboration across countries.
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The conference will be held online and is open to participants from all world regions. More information
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We invite all companies interested or active in the field of ataxias to join the upcoming AGI Industry Meeting. These meetings provide an opportunity to share updates on AGI’s latest developments and future plans, while also fostering collaboration and engagement with industry partners.
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The next AGI Industry Meeting will take place on May 12, 2026, 4–5 pm CEST (Paris) / 10–11 am EST (Boston). The meeting will be held online.
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4. Join AGI Trial Site Registry
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Sites seeing ataxia patients are welcome to join the AGI Trial Site Registry (AGI-TSR). Set up by the Ataxia Global Initiative, the AGI-TSR is a global registry of clinical ataxia centers/ataxia sites, with currently 71 sites worldwide registered.
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Why register? Being part of the AGI-TSR connects your site to the wider ataxia research landscape. It helps make your site visible for future collaborations, clinical trial opportunities, and data-sharing initiatives. It’s also a great way to contribute to a coordinated, global effort to advance care and treatment for people living with ataxia.
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If your center is engaged in clinical care or research for ataxia, this is a great opportunity to connect, contribute, and collaborate.
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👉 Join the AGI-TSR and help advance ataxia trial readiness!
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5. NAF/AGI Ataxia Resource Database
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The Ataxia Global Initiative is collaborating with the National Ataxia Foundation (NAF) to develop a centralized Ataxia Resource Database—a place where researchers can easily find, compare, and share validated research tools.
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The database will compile practical information on cell and animal models, protocols, antibodies, and other key research resources, helping improve transparency, reproducibility, and efficiency while reducing duplicated effort across labs.
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By contributing details about your disease models and tools, you can also help connect researchers working on similar Ataxia subtypes, models, or methodologies, strengthening collaboration across the field.
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Completing the questionnaire takes about one minute. If you indicate that you are willing to contribute, you will be contacted in the next few weeks for follow up.
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Complete the questionnaire:
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6. NAF's Clinical Research Consortium for the Study of Cerebellar Ataxia (CRC-SCA)
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After a record-breaking number of research visits in 2025, the National Ataxia Foundation’s Clinical Research Consortium for the Study of Cerebellar Ataxia (CRC-SCA) is starting off 2026 with over 1,200 participants enrolled to date!
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This Natural History Study (NHS) aims to generate data regarding progression rates of SCA 1, 2, 3, 6, 7, 8, 10, 27B, and RFC1-ataxia using clinical rating scales, timed performance measures, and patient-reported outcome measures.
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If you are an investigator interested in obtaining CRC-SCA clinical data or biofluids, follow the link below to learn more about how to request access.
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7. ICAR 2026
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Ataxia UK, National Ataxia Foundation (NAF), Friedreich’s Ataxia Research Alliance (FARA), and Ataxia Global Initiative (AGI) are pleased to announce the date for the next International Congress for Ataxia Research (ICAR).
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ICAR 2026 will take place at the Renaissance Atlanta Waverly Hotel & Convention Center in Atlanta, Georgia, U.S. Please save the date for November 10-13, 2026.
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ICAR 2026 will be the place to share the latest ataxia research, including updates on Friedreich's ataxia and SCAs 1, 2, 3, 6, 7, and more. Attendees will hear developments in novel treatment approaches, clinical trial results, and scientific debates from leading ataxia researchers. There will also be the opportunity to network with academic and industry leaders. Special sessions and events are planned for junior researchers.
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Check the ICAR website for more information on the registration, abstract submission, and the venue:
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Become an AGI Member or Partner
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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 available on our website. More information about membership and partnership can be found in our charter.
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As a member, you can join the AGI working groups, nominate and vote for new members for the AGI Steering Committee, and attend our business meetings.
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