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.
Hello from NAF's Clinical Services Manager
Welcome to NAF’s first issue of Ataxia Med News. Intended to be a quick read for health practitioners that specialize in ataxia clinical care, this quarterly e-mail is meant to provide you the latest NAF resources for patients and practitioners.
For those who don’t know me, my name is Kelsey Trace and I’m an occupational therapist. As a healthcare practitioner myself, I understand the need for patient-facing resources available at your fingertips. Scroll down to find exactly that.
Need to know what programs and updates NAF offers clinicians? We are expanding those resources as our department grows. Click around below to see what we currently offer.
Ping me anytime with thoughts or suggestions.
Cheers,
Kelsey Trace, OTD, OTR/L
kelsey@ataxia.org
NAF Resources to Share with Patients
Quick Clicks for Sharing
NAF is always updating our resources and adding new ones. Please share with patients! Some recent additions include:
Newly Diagnosed Fact Sheet: A fact sheet to give patients recently diagnosed with Ataxia.
Ataxia Treatment Pipeline: The pipelines are visual tools that were created to show the progress of all Ataxia therapies that are currently being developed
Ataxia Marketplace: The marketplace is a space to discover products that may be helpful to those living with Ataxia, in partnership with Day Undefined.
Educational Webinars: Deep Dives into Specific Diagnoses
Receiving an ataxia diagnosis can be overwhelming. Patients and families may not know where to find accurate information. The National Ataxia Foundation is building a series of educational webinars that focus on one type of Ataxia at a time, designed specifically for patients and family members. New webinars are being added every month!
NAF Free Genetic Counseling and Testing Program Reaches One Year Milestone
In early 2022, NAF launched a sponsored genetic counseling and testing program for SCA1, SCA2, and SCA3. Eligibility criteria require participants to be:
- 18 years
- Reside in the U.S.
- Become a free member of NAF,
- Have at least one relative with a diagnosis of SCA types 1, 2, or 3.
In the first 12 months of this program (2/2/2022 to 2/1/2023), 114 patients completed at least 1 telehealth counseling visit, and a total of 169 counseling visits occurred. 78 participants received genetic test results.
A patient flyer and more information can be found using the link below. Please share this with patients who qualify.
For additional information, please email research@ataxia.org.
Ataxia Health Practicitioner Headlines
NAF Ataxia Centers of Excellence to Be Announced in May
Next month, NAF will announce our first round of certified Ataxia Centers of Excellence (ACE). Evaluated by leading clinicians, industry partners, and NAF staff, ACE centers provide exceptional clinical care, professional training and research, and community outreach and education for patients and families.
If you are interested in applying for designation, please submit a formal proposal by clicking below or visiting the ACE webpage.
If you are interested in reviewing applications for ACE designation, please request more information from aimee@ataxia.org.
NAF Hosts First In-Person Ataxia Clinical Training Program
Last month, 35 movement disorder fellows from 25 North American programs gathered for a 3-day ACT program in Las Vegas, Nevada. NAF’s Ataxia Clinical Training program is designed to teach and train early career neurologists how to diagnose and treat patients with Ataxia. With lectures from leading Ataxia experts, clinical demonstrations, and integration with NAF’s patient-centered Annual Ataxia Conference, the 2023 ACT sessions provided valuable learning and networking opportunities for the next generation of neurologists. NAF looks forward to offering this program annually. If you are interested in hearing more, please email beth@ataxia.org.
NAF Grants Application Cycle to Open June 30th
NAF’s grants program funds a variety of research projects focused on Ataxia basic science, translational science, and clinical research. Our next round of applications opens June 30, 2023. If you or someone you know is interested in learning more, please visit the NAF Grants program page or reach out to aimee@ataxia.org.
Recruiting Patient Participants for an Ataxia Research Study? Advertise with Us!
Are you searching for Ataxia patients or unaffected family members to participate in your research study or clinical trial? The National Ataxia Foundation can help promote research studies approved and monitored by an Institutional Review Board or Research Ethics Committee.
Simply download the Research Recruitment Application and send the completed form to research@ataxia.org. Approved studies will be listed on the NAF website, with email and social media promotion options. Want more in-depth recruitment support? We will partner with you to host an informational webinar on your study. Please email celeste@ataxia.org with any questions about research recruitment with NAF.
Help NAF Understand CDMRP Grant Funding Needs
Hereditary ataxias were added as eligible conditions to the CDMRP for FY 2023. We’d like to understand how many people plan to apply for a CDMRP grant and which types of grants have the highest interest. No identifiable information collected from the survey will be shared with external parties. Take our brief survey (less than 2 minutes) to help guide NAF’s future advocacy and outreach efforts.
Please note: NAF frequently provides input and letters of support for grants for IRB-approved studies. Please contact Dr. Lauren Moore at lauren@ataxia.org if you’d like to request NAF support of your CDMRP grant.
NAF Drug Development Collaborative News
First Approved Treatment for Friedreich's Ataxia
In February, the FDA approved SKYCLARYS (omaveloxolone) to treat Friedreich’s Ataxia. This is the first and only FDA-approved prescription medicine for Friedreich’s Ataxia. Please visit the SKYCLARYS Healthcare Professional site for more information. |
Seelos Announces Pause to Current Study for SCA3
Seelos Therapeutics, a member of NAF’s Drug Development Collaborative, announced a pause to their current study of SLS-005-302 in SCA3 patients. Seelos stated that the temporary pause was made as a business decision due to financial considerations and is not based on data related to safety or therapeutic effects. They will continue the study and data collection for patients already enrolled in order to make decisions for resuming enrollment in the future. For more info, read their press release.
First Patient Dosed in Phase 1/2a Clinical Study for Treatment of SCA1 and SCA3
Vico Therapeutics, a member of NAF’s Drug Development Collaborative, announced that their first patient has been dosed in a Phase 1/2a clinical study evaluating VO659 for the treatment of SCA1 and SCA3. This trial is taking place at locations in Europe. It is designed to assess the safety and tolerability of multiple ascending doses of VO659 and expects to enroll approximately 71 participants. For more info, read their press release.
Biogen Announces Stop to MERA Study for SCA3
Biogen, a member of NAF’s Drug Development Collaborative, announced their decision to stop the MERA study for Spinocerebellar Ataxia type 3. The decision was made after careful assessment of the nonclinical safety data, clinical pharmacodynamic data, and future development of BIIB132.
Dr. Rosalind Chuang said, “This is the not the outcome we had hoped for and we acknowledge that this news may be disappointing to SCA3 patients and the entire Ataxia community. We greatly appreciate the dedication and support by patients, their families, and patient advocacy. Biogen remains committed to Ataxia research.”
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!
