This is a periodic newsletter for Ataxia clinicians to keep them up-to-date on patient resources and other medical news. To begin receiving this newsletter, join as a professional member of NAF at www.ataxia.org/JoinNAF.
Hello from NAF's Clinical Services Team
Hello Fellow HCP’s,
When I think of February, the first thing that comes to mind is Rare Disease Month. And so, with that, I want to thank you for all that you do to guide patients through their ataxia journey. If you are looking for a way to engage in Rare Disease Month, then I have an easy action item for you. Print out a few copies of these handouts and have them available in your clinic.
Read on to view additional patient resources, NAF program announcements, and updates on recent developments in the ataxia research & drug development spaces. I hope you find these briefs valuable in your work. Please click around and reach out to our team with any questions at research@ataxia.org. Together, we can make a significant impact on the lives of those affected by Ataxia.
Be well,
Kelsey Trace
Clinical Services Director
Ataxia Healthcare Practitioner Updates
2026 Annual Ataxia Conference (AAC) Virtual Scholarships available for Healthcare Providers
Interested in hearing what patients learn at the 2026 Annual Ataxia Conference but too busy to fly to Orlando? NAF has virtual scholarships to attend NAF’s patient-geared annual conference.
The in-person AAC programming is streamed, and we want to offer select Health Care Practitioners a chance to view live content wherever they are.
Annual Ataxia Conference
April 9-11, 2026
- HCP Complimentary virtual registration ($50 value)
- Apply by March 20, 2026
- View the preliminary schedule – sessions & speakers still being added.
Free OT CEU Now Available for Ataxia Care
Occupational therapists play a critical role in supporting people living with Ataxia—and we’re excited to share a new, FREE OT continuing education opportunity designed to strengthen that care. NAF has partnered with the American Occupational Therapy Association (AOTA) and Elizabeth Foss, OTR/L to make this no-cost OT CEU available now. We encourage you to forward this resource to the occupational therapists in your network who may benefit from this training.
Nine New Ataxia Centers of Excellence Designated
Congratulations to the nine new clinics around the world that have earned designation as NAF Ataxia Centers of Excellence (ACE). This prestigious designation recognizes centers committed to advancing Ataxia research while providing comprehensive care by clinicians with specialized expertise in Ataxia and movement disorders.
You can learn more on our website. Interested in applying?We anticipate the next application cycle will open June 2026.
Speech-Language Pathology Resources Now Available
NAF has partnered with speech-language pathologists with expertise in Ataxia to develop new clinical resources to support evaluation and treatment across the continuum of care. These materials are now available on the NAF provider website and are designed to support speech-language pathologists and interdisciplinary teams working with individuals living with Ataxia.
New resources include: |
Additional SLP Resources sponsored by Ataxia UK |
VuMedi Video Education Platform Available to Healthcare Professionals
VuMedi is a leading video education platform for physicians, offering more than 65,000 videos created by nationally recognized physicians and academic partners. The platform features educational content covering current clinical practices, emerging research, and the latest medical trends across specialties.
Healthcare professionals can register for free access to VuMedi’s video library at www.vumedi.com.
Leverage One of the World’s Largest Ataxia Natural History Datasets and Biofluid Repositoriesion Program
After a record-breaking number of research visits in 2025, the CRC-SCA is starting off 2026 with over 1,200 participants enrolled to date! The 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. If you are an investigator interested in obtaining CRC-SCA clinical data, follow this link to learn more about how to request access.
More recently, alongside the MR Imaging sub-study, a second sub-study has been added to the NHS, diversifying its data collection methods. The Wearable Sensors sub-study, led by Massachusetts General Hospital, is currently enrolling SCA2 and SCA3 eligible participants.
The NHS also aims to create a rich biorepository of whole blood, plasma, serum, and cerebral spinal fluid to aid in the development of future novel biomarkers in ataxia. The BioSEND biorepository currently houses over 600 blood samples and 90 CSF samples collected from study participants. If you are an investigator interested in obtaining CRC-SCA biospecimen, follow the link below to learn more on how to request access.
Ataxia Expertise Map: Is Your Clinic Listed?
The Ataxia Specialty Clinic Resource Map, curated by NAF, helps individuals and families affected by Ataxia identify clinics providing specialized care and connect with providers closer to where they live. If your clinic is not currently included, we invite you to submit your information using the form below.
ICAR2026: Registration and Abstract Submission to Open March
The 2026 International Congress for Ataxia Research (ICAR), Ataxias and Beyond: Shared Pathways, Shared Progress, will be hosted November 10-3 in Atlanta, GA, USA.
NAF, along with partner organizations Ataxia UK, Friedreich Ataxia Research Alliance (FARA), and Ataxia Global Initiative (AGI), is pleased to invite all interested ataxia researchers, clinicians, and allied industry partners to this biannual meeting. For more information and to sign up for updates click the link below.
Registration and abstract submission will open in March 2026, with early bird prices available until September 1st. Sign up for updates via the new ICAR website here.
Ataxia Clinical Training: 2026 Update and 2027 Announcement
NAF looks forward to welcoming our largest cohort of trainees ever to our 5th annual Ataxia Clinical Training (ACT) course in Orlando, FL this coming April.
Designed as a hands-on, intensive “deep dive” into Ataxia diagnostics and clinical care, ACT is the premier clinical education training opportunity for clinicians looking to strengthen their confidence and competence in treating patients with Ataxia.
Announcing ACT 2027!
Interested providers, please save the date for NAF’s next Ataxia Clinical Training:
April 1-3, 2027
Las Vegas, Nevada
More details, including a link to apply to join next year’s cohort, will be shared later this summer. Watch for updates on our website and contact Aimee Alcott, Sr. Research Coordinator, at aimee@ataxia.org with questions.
AGI Membership and Partnership Opportunities Available
Applications are available for individual membership and organizational partnership with the Ataxia Global Initiative (AGI). Additional information about eligibility, roles, and expectations can be found in the AGI Charter.
Members have the opportunity to participate in AGI working groups, nominate and vote on new members for the AGI Steering Committee, and take part in AGI business meetings.
Action for ARSACS Foundation launches in USA
Action for ARSACS Foundation USA (AFA) is a newly established 501(c)(3) nonprofit organization committed to advancing research, raising awareness, and accelerating the search for effective treatments and a cure for Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay (ARSACS). AFA is a sister foundation to the ARSACS Foundation, an international patient advocacy organization based in Montréal, Canada, which serves as an information hub for ARSACS patients around the world.
10 hour course available: Rehab Services for Neurodegenerative Cerebellar Ataxia and Atypical Movement Disorders
This course is designed for rehabilitation providers and clinicians with a strong interest in movement disorders. This online course includes a comprehensive online curriculum that spans across all disciplines. Registration Fee: $275
New PreRARE Clinical Trial Educational Resources
Resources to Share with Patients
NAF Genetic Counseling and Testing Program Now Includes SCA6 & 7
NAF’s free Genetic Counseling and Testing Program, originally launched in 2022 for individuals at risk for SCA1, 2, or 3, has expanded to include individuals at risk for SCA6 and SCA7. The program provides access to virtual genetic counseling and testing to support diagnosis, care planning, and informed decision-making for individuals and families affected by Ataxia. A program handout can be downloaded HERE.
Since its launch, the program has provided more than 970 virtual genetic counseling visits to 644 individuals, with 480 genetic test results requested and returned to patients.
Let’s Move Together- Free Exercise Program
The Let’s Move Exercise & Wellness Program is a virtual group exercise program hosted by Johns Hopkins University and sponsored by NAF for individuals living with movement disorders. Sessions focus on balance, core strength, and coordinated movement in a safe, supportive environment designed to accommodate a range of mobility levels.
Most exercises are performed seated, with optional standing progressions available for appropriate participants, helping make the program accessible to individuals with varying abilities. Healthcare providers are encouraged to share the registration link with appropriate patients.
This program was recently featured in a poster presentation at American Physical Therapy Association’s Annual Meeting.
Opportunities for Patient Participation in Ataxia Research
Do you have patients who want to get involved in Ataxia research studies? We have a list of interventional clinical trials, observational clinical trials, and basic research studies seeking participants with a variety of Ataxia types. In-person and remote participation options available.
Back in the Lab for FA with Bill Nye — Full Series Now Available
All four episodes of Back in the Lab for FA with Bill Nye are now available to watch. In this video series, Bill Nye explains the science behind Friedreich Ataxia—including its underlying causes, how it affects the body, and the importance of ongoing research—in a clear and engaging format designed for patients, families, and the broader community.
Healthcare providers are encouraged to explore the full series and share these educational resources with patients and through their professional and social media channels.
From the Field: Ataxia Updates
Practice Recommendations for Genetic Testing of Ataxias
Ataxia Expert Authors published evidence-based, consensus-driven recommendations aimed at supporting clinicians in evaluating patients with unexplained ataxia in order to provide timely evaluation and care, both for patients and their at-risk relatives.
IntraBio Announces Positive Pivotal Trial Results of Levacetylleucine for the Treatment of Ataxia-Telangiectasia
IntraBio Inc. announced positive topline results from its Phase III IB1001-303 trial evaluating levacetylleucine in children and adults with Ataxia-Telangiectasia. The study met its primary endpoint, showing a statistically significant and clinically meaningful improvement in ataxia symptoms compared to placebo after 12 weeks of treatment.
Solid Biosciences Doses First Participant in First-in-Class Phase 1b FALCON Trial Evaluating SGT-212 Dual-Route Gene Therapy for the Treatment of Friedreich’s Ataxia
Solid Biosciences announced this week that the first participant has been dosed in the FALCON Phase 1b clinical trial, a first-in-human study evaluating SGT-212, its investigational gene therapy for the treatment of Friedreich’s ataxia (FA).
Connect with NAF: News & Updates
Are you a Social Worker Looking for Extra Paid Opportunities?
NAF is professionalizing support services by hiring a network of part-time contracted social workers to provide local services to our members. This pilot is beginning in 11 states: CO, FL, IN, MI, MN, MO, NC, NV, OH, SC and WI. We welcome your referrals; licensed social workers in those states may view position and application details on WEBSITE.
Connect with us at the American Academy of Neurology Conference
The NAF Research and Clinical Services team will be networking and exhibiting at the American Academy of Neurology (AAN) from April 18-22, 2026 in Chicago, IL. Find our table in the Association Neighborhood section, where we’ll be highlighting various NAF resources, research, engagement opportunities, and more! Learn more about the AAN Conference and how you can visit NAF’s table HERE.
Advancing Ataxia Research Through NAF’s Grants Program
NAF is proud to sponsor emerging and established researchers through our annual grants program. Thanks to the generous support of our community, NAF funds nearly $1,000,000 in Ataxia research each year.
Some recent clinical studies supported by NAF:
- Dr. Pedro Rodriguez Cruz, National Center for Genomic Analysis: Hereditary Ataxia in underrepresented populations of West Africa: increasing diversity, equity and inclusion in ataxia research
- Dr. Allison Hilger, University of Colorado-Boulder: Respiratory Incoordination as a Driving Mechanism in Ataxic Dysarthria
- Dr. Louisa Selvadurai, Monash University: A scale to evaluate the neuropsychiatry of cerebellar diseases
NAF will be announcing our 2026 awardees later this spring—watch our website!
Next NAF Funding Opportunity
Applications for FY2027 awards will open in summer 2026. Requests for Proposals (RFPs), including finalized submission dates and program details, will be announced in late spring. Please visit our website for the most up-to-date information on funding opportunities and program announcements.
Opportunities to Serve as a Guest Speaker for NAF Support Groups
The NAF Community Services Department maintains a Guest Speaker Resource List to help connect support group leaders with experts across a variety of fields. Many support groups meet virtually and at varying days and times, and a typical guest speaker commitment is 30–60 minutes.
Access to the contact list is limited to support group leaders, who may reach out directly to inquire about presentation opportunities. If you are interested in being added as a potential guest speaker and allowing support group leaders to contact you, please reach out to NAF’s Community Services Coordinator, Kari Brooks, at Kari@ataxia.org.
Recruiting Participants for an Ataxia Research Study?
NAF supports researchers and clinicians by helping connect approved research studies and clinical trials with the Ataxia community. Studies that are approved and monitored by an Institutional Review Board (IRB) or Research Ethics Committee may be promoted through NAF’s research recruitment channels.
Researchers can download the Research Recruitment Application and submit the completed form to research@ataxia.org. Approved studies are listed on the NAF website, with additional opportunities for promotion through email and social media. For studies seeking more in-depth recruitment support, NAF can also partner with research teams to host informational webinars for the community.
For questions about research recruitment opportunities with NAF, please contact celeste@ataxia.org.
Grant Opportunities
ARPA-H Opens BIOGAMI Funding to Advance Protein Aggregation Research
The Advanced Research Projects Agency for Health (ARPA-H) has announced a new funding opportunity Through its BIOmolecular Grammar for Protein Aggregation Modulation and Intervention (BIOGAMI) program
This four-year initiative is aimed at eliminating neurodegenerative diseases by detecting and controlling the earliest stages of protein misfolding and aggregation. BIOGAMI will support teams developing next-generation AI and experimental models for intrinsically disordered proteins, as well as novel therapeutic and detection strategies that prevent harmful aggregation while preserving protein function. Key dates include a hybrid Proposers’ Day on February 20, 2026, a required Solution Summary due March 4, 2026 (12 PM ET), and a full Proposal deadline of April 15, 2026 (12 PM ET). Clinicians and researchers interested in innovative approaches to protein dysfunction and early intervention are encouraged to review the full solicitation for details.
Visit the BIOGAMI program page for more information.
Critical Path Institute Announces 2026 BRIDGe Grant Funding Opportunity
The Critical Path Institute’s Translational Therapeutics Accelerator has announced its 2026 global Request for Proposals for the BRIDGe (Bridging Research and Innovation in Drug Development) Grants
This grant mechanism is aimed at helping academic investigators advance promising therapeutic candidates from the lab toward clinical readiness. This funding opportunity supports projects across multiple modalities—including small molecules, protein-based therapeutics, and gene-based therapies—and includes focus areas such as brain health, pediatrics, and rare diseases. Applicants will receive not only financial support but also strategic guidance to help bridge the “valley of death” in drug development and move innovations closer to patient impact. To learn more about this program, CLICK HERE
Join the mailing list to receive future Ataxia Med News.
This is a new periodic newsletter for Ataxia clinicians to keep them up-to-date on patient resources and other medical news. To begin receiving this newsletter, join as a professional member of NAF at www.ataxia.org/JoinNAF. It’s free!
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