NAF has launched a petition on Change.org calling on the FDA to prioritize treatment options for rare diseases with urgent unmet needs, including Spinocerebellar Ataxia (SCA).
SIGN THE PETITION
Author: Mark Hazlin, NAF Board Member In 2021, as I logged into the virtual platform for the National Ataxia Foundation (NAF) Hill Day for the first time, I was nervous. As a PR person in Washington, DC, I’ve been to these advocacy events before. I have a good idea of 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…
NAF is hiring a full time Accountant. This person will be responsible for for all core accounting functions including: A/P and A/R, payroll, maintaining the general ledger, journal entries, reconciliations, and assisting with the month-end close. Our staff has the option of working remotely, with quarterly in-person collaboration days. This Read More…
Author: Sherry McLaughlin, NAF Support Group Leader What do you do when you or a loved one has been diagnosed with a Rare Disease? You search for a physician who is knowledgeable, and you seek out others with the same condition. This is exactly why the Pacific Northwest Rare Disease 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…
With Mother’s Day approaching, NAF would like to recognize all the amazing moms in the Ataxia community. Whether you are a mother navigating her own diagnosis or caring for loved ones living with theirs, we know that you face this journey with courage, strength, and resiliency. You are an inspiration. Read More…
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…
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…
