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Newsletter June 2026
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- Ataxia Advisory Committee for Therapeutics (Ataxia ACT)
- Recommendation Paper by AGI MRI Biomarkers Working Group
- Video and Slides of AGI 1st Regional Conference in Latin America
- Join AGI Trial Site Registry
- NAF/AGI Ataxia Resource Database
- NAF's Ataxia Clinical Training 2027
- Register for ICAR 2026
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1. Ataxia Advisory Committee for Therapeutics (Ataxia ACT)
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The Ataxia Advisory Committee for Therapeutics (Ataxia ACT) will meet on 9-10 November 2026 Atlanta, prior to the ICAR. Applications are open!
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Pre-application deadline: 1 July 2026
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Two review slots are currently available
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Are you working on a preclinical or clinical ataxia therapy development program?
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Get academic expert input to strengthen your strategy and take it to the next level.
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Ataxia ACT offers tailored, multi-disciplinary reviews to help overcome common challenges in ataxia drug development - from validating therapeutic targets and evaluating preclinical data to optimizing trial design and regulatory strategy.
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Our committee includes independent experts in science, medicine, regulatory agencies, and patient advocacy. We support companies at all stages, from preclinical to clinical, with practical, actionable feedback. Join us in advancing therapies that make a real difference to people living with ataxia.
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2. Recommendation Paper by AGI MRI Biomarkers Working Group
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The Ataxia Global Initiative is pleased to announce the publication of “MRI end-points for clinical trials in ataxias: recommendations from the Ataxia Global Initiative MRI Biomarkers Working Group” (Öz et al. June, 2026).
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Group Leads: Jennifer Faber (Bonn, Germany), Pierre-Gilles Henry (Minnesota, USA).
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This consensus paper provides evidence-based recommendations for the use of MRI biomarkers as outcome measures in clinical trials for different ataxia subtypes.
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As disease-modifying therapies, including gene therapies, advance through the clinical development pipeline, sensitive biomarkers are becoming increasingly important for participant selection and treatment monitoring. The paper reviews the current evidence for quantitative MRI measures and offers disease-specific recommendations to support future clinical trials, while also identifying key research priorities to further strengthen the role of MRI biomarkers in ataxia drug development.
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3. Video and Slides of AGI Regional Conference in Latin America
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Recordings and presentation slides from the AGI Regional Conference in Latin America, held on 7 May 2026, are now available online.
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As the first regional conference organized by the Ataxia Global Initiative, the meeting brought together researchers and clinicians from across Latin America to discuss advances in hereditary ataxia research, clinical care, diagnosis, and opportunities for regional collaboration.
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We invite everyone who could not attend - or who would like to revisit the sessions - to access the conference materials and benefit from the valuable insights shared by the speakers and participants.
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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 82 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 to 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 Ataxia Clinical Training 2027
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The National Ataxia Foundation's Ataxia Clinical Training (ACT) 2027 is coming to Las Vegas, Nevada, April 1–3, 2027!
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ACT brings together neurologists, neurology trainees, advanced practice providers, and other clinicians for practical, evidence-based training in ataxia diagnosis, management, and emerging therapies. Through expert-led sessions, small-group clinical workshops, and patient-centered learning experiences, participants build knowledge, skills, and connections that advance ataxia care worldwide.
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Learn more and stay informed:
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• Join as a free NAF Clinician Member to receive updates and application announcements: Click here to register
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Mark your calendar and stay tuned for application details.
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7. Register for ICAR 2026
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Ataxia UK, National Ataxia Foundation (NAF), Friedreich’s Ataxia Research Alliance (FARA), and Ataxia Global Initiative (AGI) invite you to register 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., November 10-13, 2026.
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Early bird tickets are available until 31 August.
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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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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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