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National Ataxia Foundation

Research Pipeline

Education

Overcoming Ataxia: How IVF PGD Empowered Jessica’s Journey

Family planning when faced with a hereditary disease can create difficult decisions. Read about one woman’s remarkable journey of courage, hope, and determination in the face of adversity. Jessica shares her experience utilizing in-vitro fertilization preimplantation genetic diagnosis (IVF PGD) to start a family free from the shadow of Ataxia. Discover how Read More…

11 ejercicios para pacientes con ataxia

Autores invitados: Sheng-Han Kuo MD, Chen-Ya Yang, MD, MPH, and Geraldine Yu, PT, DPTSoporte técnico: Tiffany Chen BS, Johns Hopkins UniversityTranslator: Roberto Cieza PhD   La ataxia es un trastorno neurológico que afecta a personas de todas las edades. Las personas que viven con ataxia pueden experimentar una serie de problemas Read More…

Social Security Disability Benefits Q&A

The following information was provided by the Social Security Administration. How do I apply for disability benefits? How long does it take to get a decision after I apply for disability benefits? Answer: You can apply for disability benefits online at www.ssa.gov/benefits. To get a decision on your disability application Read More…

Ataxia Med News – April 2023

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 Read More…

Woman in clinic drawing blood from a man.

Getting Involved with Ataxia Research

Taking part in research is one way to help accelerate the development of treatments for ataxia. Some people like playing an active role in improving our understanding of ataxia by participating in clinical trials and other research studies. However, participating in research is a deeply personal choice. There are a Read More…

NAF Honors Community Members for Their Achievements

Each year on the final night of the Annual Ataxia Conference we honor members of the Ataxia community for truly standing out in the field of Ataxia research or awareness. We want to congratulate this year’s awardees and thank them for their dedication and achievements to the Ataxia community!  Check Read More…

FDA Approves First Treatment for Friedreich’s Ataxia

The FDA recently the FDA announced approval for SKYCLARYS (omaveloxolone) for the treatment of Friedreich’s Ataxia. This is the first and only FDA-approved prescription medicine for Friedreich’s Ataxia. NAF is thrilled about this announcement and proud to have been involved in the process, from clinical trial recruitment to educating our community about Read More…

Advancing Research by Joining the CoRDS Patient Registry

The Coordination of Rare Diseases at Sanford (CoRDS) coordinates the advancement of research into 7,000 rare diseases via data sharing and study recruitment.  CoRDS works with advocacy groups such as the National Ataxia Foundation, individuals who have a diagnosis of any form of Ataxia, and researchers who are studying various Read More…

NAF Announces New Ataxia Centers of Excellence Program

In our continued commitment to improving clinical care and accelerating treatment development, we’re proud to announce NAF’s new Ataxia Centers of Excellence (ACE) designation! The ACE program will recognize exceptional centers providing comprehensive care and services for individuals affected by Ataxia and their families. In addition to providing expert clinical Read More…

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