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).
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We regrettably announce that the 2020 Annual Ataxia Conference has been cancelled due to evolving concerns over the fast moving situation with coronavirus COVID-19. We want everyone to know that this decision was not made lightly. The health and safety of our Ataxia community is our main priority. We did Read More…
Guest Author: Rachel Gaffney, Outreach Specialist at Disability Benefits Help If you have Ataxia, you may experience a variety of challenges. Ataxia can be disabling, and if you are unable to work and earn a living because of the severity of the condition, you may qualify for disability benefits from the Social Read More…
Author: Linda Snider Sidwell, MD, NAF Board Member and Support Group Leader The 2020 Annual Ataxia Conference in Denver, Colorado is going to be a world class conference with scientists, pharmaceutical companies, and of most importantly, Ataxians. I’m hoping to see you there. Why do you want to come to Denver you Read More…
Author: Lauren Sormani, NAF Support Group Leader I was diagnosed with Spinocerebellar Ataxia Type 8 in 2017 when I was 21 years old. A few months after my diagnosis I found a support group near me and I attended. I was thrilled to meet other people with Ataxia, but what Read More…
Working with your doctor to obtain a diagnosis can be difficult, especially with a rare disease. Medical history, family history, and a neurological evaluation are used to diagnose Ataxia. Various blood tests may also be used to rule out other disorders. Your doctor may recommend genetic testing if a hereditary Read More…
Author: Dana Mauro, NAF Support Group Leader Hi, let’s talk about Ataxia. When my husband, John, was diagnosed with Ataxia, we were desperate for information. We scoured the internet looking for anything on Ataxia, but all too often what we found was inaccurate and just caused us more worry. We wanted Read More…
We’ve been talking a lot lately about Ataxia clinical trials. But what is a clinical trial? Should you sign up to participate when there is one available for your type of Ataxia? What happens during a clinical trial? Learn everything that you need to know with this webinar: Clinical Trials Read More…
Guest Authors: Sheng-Han Kuo MD, Chen-Ya Yang, MD, MPH, and Geraldine Yu, PT, DPTTechnical Support: Tiffany Chen BS, Johns Hopkins University Ataxia is a neurologic disorder that affects people across all ages. People living with Ataxia may experience problems including incoordination of movement, slurred speech, poor balance, and gait abnormalities. Read More…
Author: Andrew Rosen, Executive Director A Note from Andrew Hi Everyone: August in Minnesota. It is hot and humid, and thoughts have turned to my three teenagers getting ready to go back to school. I love the pace of summer – everything slows down a bit, the days are long, Read More…
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