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
If you are new here, welcome! We hope you are new to these periodic e-newsletters because we connected at the Movement Disorder Society conference or recently via email. We had such a wonderful time exhibiting and networking at the Movement Disorder Society Meeting for the first time.
Ataxia Med News is intended to be a quick read for health practitioners that specialize in ataxia clinical care. We understand the need for patient-facing resources available at your fingertips. Scroll down to find exactly that.
Additionally, NAF is expanding our clinician facing resources as our department grows. Click around below to see what we currently offer. Reach out to us anytime with thoughts or suggestions.
Be Well,
Kelsey Trace, OTD, OTR/L
kelsey@ataxia.org
kelsey@ataxia.org
NAF Resources to Share with Patients
Genetic Counseling and Testing Screener Form Now Available
NAF offers free virtual genetic counseling and testing for adults in the US at-risk for SCAs1, 2, and 3. “At-risk” means the patient has a family member with a confirmed genetic diagnosis. Participants have no out-of-pocket costs. Share this information with patients who qualify! Download our handout or email us at research@ataxia.org with questions.
Participants receive:
- Pre-test virtual genetic counseling session
- At-home DNA test
- Option to attend a post-test virtual genetic counseling session
Is Your Clinic Listed on the Neurology and Specialty Clinics List?
The Neurologist and Specialty Clinic Resource List, provided by NAF is a highly regarded resource among the Ataxia community. Its purpose is to provide a centralized location for individuals affected by Ataxias to access options for specialized medical care.
If you are interested in having your clinic added to our list, complete this form. Please email research@ataxia.org if you have any questions.
Ataxia Health Practicitioner Headlines
Genetic Testing for SCA27b is Now Available
SCA27b, one of the newest identified forms of Hereditary Ataxia, is anticipated to be a highly prevalent type of Ataxia. The University of Chicago Genetics Lab announced that a CLIA-certified genetic test is now available. This is the only CLIA-certified test available for SCA27b.
As an ordering practitioner, if you have previously sent unknown Ataxia samples to UChicago for Ataxia genetic testing prior to June 2023 and no diagnosis was discovered for the patient and the patient provides consent, THEN: you can contact the UChicago Genetics lab to request that samples be retested for SCA27b for the listed menu price.
ACE Neurologist Featured in Practical Neurology
Dr. Pravin Khemani’s publication titled “Adult-Onset Cerebellar Ataxias: Framework for Evaluation” was recently featured in Practical Neurology. Check out Dr. Khemani’s publication and video HERE on VuMedi. Dr. Pravin helped develop NAF’s Ataxia Clinical Training in 2022, and his clinic is a NAF Ataxia Center of Excellence.
New Webinar Series Beginning This Fall
NAF’s Research team is excited to announce a new webinar series, Science Showcase, highlighting Ataxia research funded by NAF grants. Speakers will have the opportunity to share their projects with an audience of fellow academics, clinicians, industry partners, and NAF members. Join us for our second showcase on Friday, October 27th and watch your email for future invites!
If you are a past grant awardee interested in participating, please reach out to Aimee Alcott, NAF Research Services Assistant, at aimee@ataxia.org.
Research Grant Submission Update
We are thrilled to share that NAF received a record number of letters of intent this year, and we look forward to inviting a select number of applicants to submit full proposals later this fall. Awarded projects will be announced in the spring of 2024. It’s never too early to begin planning for next year’s submission period! Please review the NAF grants webpage and contact Aimee Alcott at aimee@ataxia.org with questions.
Ataxia Centers of Excellence Updates
NAF proudly announced our Ataxia Centers of Excellence (ACE) sites in May & September 2023. We have designated 24 U.S. and international clinics whose providers demonstrate exceptional clinical care, a commitment to professional training and research, and focus on community outreach and education for patients and families.
NAF is currently accepting a third round of applications due November 30, 2023. If you are interested in applying for designation, please complete the online application. Reach out to kelsey@ataxia.org for more information.
ACT - Now Accepting Applications
Join us at NAF’s Ataxia Clinical Training (ACT) program from May 30 to June 1, 2024 in Orlando, FL, US. ACT is an exceptional opportunity to gain practical knowledge about the diagnostic investigation and treatment of Ataxias, while personally interacting with patients affected by Ataxia. Whether you’re an industry professional or a medical expert, ACT 2024 is your chance to expand your knowledge and make a real difference in the lives of those affected by Ataxia.
Attendees are introduced to ongoing research in the field of Ataxia. The ACT includes topics on diagnostic approaches to Ataxias, heredodegenerative and Acquired Ataxias, neurogenetics of Ataxias, treatment of Ataxia, and research on Ataxia. ACT provides attendees with the ability to interact with Ataxia experts, many of whom are reputable clinicians and scientists, and explore opportunities for specializing in this field.
Applications are now being accepted by October 30, 2023. You can view the invitation letter here. In response to the overwhelming success of ACT 2023, we are extending the invitation to interested industry or medical professionals seeking to broaden their understanding of Ataxia. Limited opportunities for partial sponsorship are available for movement disorder, neuromuscular, and genetics fellows.
For more information and to stay up to date, visit our website HERE. Email research@ataxia.org with any questions.
Ataxia Discoveries
Study on Novel Spinocerebellar Ataxia Published
In a study published in Movement Disorders on May 6th, researchers from Central South University in China identified a novel Spinocerebellar Ataxia subtype caused by an exonic CAG repeat expansion in THAP11.
Published Article on Newly Identified SCA27b
A study published on May 11th in Brain offers insights into the clinical presentation and natural history of the recently identified Autosomal Dominant Ataxia, SCA27b.
Connect with NAF
Provide Your Expertise on a Care Partner Panel
NAF is organizing a future series of webinars to assist care partners who provide care for loved ones with Ataxia. Our aim is to offer guidance, strategies, and resources to support them in their role.
We are looking for speakers interested in participating on a panel for 1-hour webinars. Those interested are invited and encouraged to submit a proposal.
- Parents, spouses/partners, or family members who are providing or have provided direct care to a loved one living with Ataxia.
- Social Workers
- Mental Health Professionals
- Wellness Professionals
- Palliative Care Professionals
- Hospice Care Professionals
- Financial Planning Professionals
- Home Health Care Professionals
Visit NAF at the National Society of Genetic Counselors Annual Conference
The NAF Clinical Services team will be networking and exhibiting at the National Society for Genetic Counselors Annual Conference from October 17-21, 2023 in Chicago, IL. NAF will be hosting a table highlighting NAF resources, engagement opportunities, and more. Learn more about the NSGC Annual Conference and how you can visit NAF’s table HERE.
Calling All Genetic Counselors: Share Your Expertise Via Our Genetic Testing Resources
NAF provides comprehensive support and resources to those living with Ataxia. As part of our ongoing efforts, we are creating a collection of Genetic Testing Resources to educate and empower individuals about the importance of genetic testing in ataxia diagnosis and management. We are looking for genetic counselors and other dedicated health professionals to collaborate on creating content to provide to the Ataxia community.
Joining our team of contributors will not only allow you to showcase your expertise but also foster collaboration and professional development within the genetic counseling community. Your contributions will make a lasting impact on the lives of individuals affected by ataxia and their families.
To express your interest or learn more about volunteering to write or review content for our Genetic Testing Resources, please reach out to research@ataxia.org.
Recent Poster Presentations
NAF’s abstract titled “Learnings from inaugural year of foundation sponsored genetic counseling and testing program for Spinocerebellar Ataxia (SCA) types 1, 2, and 3” was presented as a poster at MDS.
NAF presented a virtual poster at the National Institute of Neurological Disorders and Stroke (NINDS) Non-Profit Forum from July 24-25, 2023 titled, “The National Ataxia Foundation’s Drug Development Collaborative: Breaking Down Barriers to Clinical Trial Readiness for the Ataxias.” Learn more about the NINDS Nonprofit Forum and how you can view NAF’s poster HERE.
Save the Date for ICAR 2024 in London
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).
ICAR 2024 will take place at the Leonardo Royal Hotel London Tower Bridge in London, UK. Please save the date for November 12-15, 2024. We hope to see you in London!
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!
