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Newsletter January 2025
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- New AGI Steering Committee
- Ataxia Advisory Committee for Therapeutics
- AGI Trial Site Registry
- 2025 Ataxia Clinical Training (ACT) Program
- 2025 International MJD Conference
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1. New AGI Steering Committee
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We are pleased to announce that the Ataxia Global Initiative has elected a new Steering Committee, which reflects AGI's global and multidisciplinary approach, with members from North and South America, Europe, Afrika, Asia, and Australia. Covering different backgrounds – academia, clinical care, patient advocacy organizations (PAOs), and industry – the committee ensures a well-rounded perspective to address the diverse challenges faced by the ataxia community. Steering Committee plays a key role in advancing our shared mission of facilitating trial-readiness in ataxias.
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2. Ataxia Advisory Committee for Therapeutics
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Ataxia Advisory Committee for Therapeutics (Ataxia ACT) has been launched in November 2024. It was truly unique to collaborate with a multidisciplinary committee, bringing together diverse perspectives and expertise to tackle complex challenges!
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The Ataxia ACT is one of AGI’s trial readiness services. Its main objective is to review and provide objective advice on the planning and execution of preclinical and clinical drug development programs for (all forms of) ataxias.
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Upcoming Ataxia ACT meetings:
Ataxia ACT meeting on 3-4 April 2025: The application submission is closed.
Ataxia ACT meeting on 6-7 November 2025: Application deadline is 1 July 2025
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3. AGI Trial Site Registry
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The AGI invites its members to enter their ataxia centers in the AGI-Trial Site Registry.
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Join the AGI-TSR and help advance ataxia trial readiness!
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By adding your site to the AGI-TSR, you will be asked to provide key site-level information relevant to ataxia research and clinical studies. This includes:
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Aggregate data about your patient population with trial-relevant ataxia subtypes
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Details about your facilities
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Available specialized equipment
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Your site’s clinical trial experience
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By joining the AGI-TSR, your site will:
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· Gain increased visibility among patients, researchers, clinicians, and industry partners.
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· Be considered for participation in clinical trials and collaborative research projects.
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· Become part of an international network of leading centers driving innovation in ataxia care and research.
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Why is the AGI-TSR valuable?
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The AGI-TSR streamlines research feasibility and facilitates therapy development by providing a single point of access to specialized ataxia sites and their capabilities. By combining site-level data with patient registries, it improves trial recruitment process and enables industry and researchers to collaborate effectively. Ultimately, this initiative aims to advance therapy development and deliver meaningful benefits to patients with ataxias.
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4. 2025 Ataxia Clinical Training (ACT) Program
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The National Ataxia Foundation (NAF) invites residents, fellows, and neurologists to the 2025 Ataxia Clinical Training (ACT) program, our 4th annual training conference dedicated to improving diagnostic and clinical care for patients with ataxia.
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ACT offers practical insights into diagnostic investigation, neurogenetics, treatment, and research through lectures, breakout sessions, and live clinical demonstrations by renowned ataxias clinicians and experts. It runs concurrently with NAF’s Annual Ataxia Conference, fostering direct interaction with hundreds of affected families across various ataxic disorders.
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ACT will be held in Las Vegas, Nevada, US from March 27-29, 2025. We welcome all healthcare professionals that work with ataxia patients, as well as individuals from industry that are interested in learning more about the care and diagnosis of patients with cerebellar ataxias. Attendees completing all program requirements receive a certificate of completion. Registration fees are waived for neurology residents and fellows on a first-come, first-served basis. Travel and lodging expenses are not covered.
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For questions, please contact the NAF Clinical Services Team at aimee@ataxia.org. Kindly share this invitation with colleagues, fellowship directors, and residency program directors.
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5. 2025 International MJD Conference
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🌟 2025 International MJD Conference Abstract Deadline is 31 January. Early Bird registration extended to 31 January 2025.🌟
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Call for abstracts for the 2025 International MJD Conference to be held in Darwin, Australia!
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This year’s theme, ‘Bridging Science and Service: Research and Culturally Responsive Healthcare for Cerebellar Ataxia,’ invites health practitioners, researchers, policymakers, and community members come together to exchange ideas and promote best practice to advance culturally responsive healthcare delivery.
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The Machado-Joseph Disease Foundation (MJDF) is a community-based organisation focused on collaborating with families and communities affected by MJD and SCA7 in urban, regional and remote settings. MJDF actively promotes a way of engaging with individuals, families and communities, that is known as ‘Our Way’. This approach features a two-way engagement model with Aboriginal Community Workers and community members to enhance culturally responsive healthcare services.
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Be part of this important event, sharing your expertise and insights to improve healthcare for those living with MJD (SCA3) and SCA7.
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📅 Deadline for submissions: 31 January 2025
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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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