According to the National Council on Independent Living, Centers for Independent Living (or CILs) are community-based, cross-disability, non-profit organizations that are designed and operated by people with disabilities. Kory Macy, a person with Ataxia who uses a wheelchair, explains what CILs are and why they may be helpful to people Read More…
Have you ever wanted to volunteer as an Ataxia research participant? Have you been unsure about how to find out about ongoing research studies? Have you wanted to help researchers better understand Ataxia? One answer to all three of these questions is a patient registry. A patient registry collects specific Read More…
Many people with Ataxia are interested in participating in clinical research, but are not sure where to start. It can be tricky to know where to start looking for information. Our Participate in Ataxia Research webpage is a good place to start. However, we often receive questions about how to Read More…
It takes a long time to develop a new drug. Not to mention it can be very expensive. But why does it take so long and cost so much? In this article, we will be going through the five key steps in drug development to shed some light on this Read More…
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 Read More…
Thank you for submitting your comments for the FDA! Troriluzole, an experimental drug being developed by Biohaven, completed Phase 3 clinical trials last year. While the primary endpoint assessing benefit across all Spinocerebellar Ataxia (SCA) types was not met, Biohaven believes the results show benefit among participants with SCA Type 3 Read More…
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…
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…
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…
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…
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