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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A Life of Resilience: Kamal Ansari’s Journey with Ataxia Kamal Ansari gazed out of the window, the sun casting long shadows over his garden. At 72, he had seen more than most could imagine, and his journey had been one of perseverance and resilience. Born in Pakistan, Kamal had served Read More…
The well-known science educator joins with the National Ataxia Foundation on campaign to build broad understanding of Ataxia, a progressive brain disease that impacts a person’s speech and movement. Minneapolis, MN (September 25, 2024) – Bill Nye, who has helped make science a part of pop culture for a generation Read More…
Hello..My name is Jean Marc Roy. I am married with two adult children and a grandson. I also have five siblings. I’m 62 years old. In 2013 I had a mining accident and ended up having three operations on my back which resulted with severe drop foot. I have severe Read More…
On my 50th birthday my son and I rode bikes across the state of Kentucky. I did this 7 times before I turned 60. I have always been very active hiking, running, gym, cycling and basically anything to challenge me and contribute to health. I am now 68 and just Read More…
Guest Author: Ellie Martin Physical therapy is good for rehabilitation. However, it can be straining on our muscles by the end of a session. Aquatic therapy is a way to help relax muscles while also providing the same benefits as land therapy. Aquatic therapy is described as a technique that 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 Happy summer, all! I am pleased to present the latest edition Read More…
Bill Nye opens up about his personal connection to Ataxia, a progressive hereditary disease. He lost is father to Ataxia and has many family members who are affected, including his sister and brother. Bill Nye will share a series of 4 short videos to his 23+ million followers on social Read More…
I’m a wheelchair user and have been for the last 10 years. I was diagnosed with Acute Myeloid Leukemia in 2010, my doctor identified me as having the flit 3 gene which makes leukemia tough to beat without a bone marrow transplant. In the beginning of 2012 I had my Read More…
My start with this condition began at the age of 16, when I started to lose my balance and got a drunken gait. Over time, I lost my reflexes, my muscle strength began to decrease, and my muscles atrophied. The family doctor sent me to an ENT consultation, then at Read More…
Guest Author: Ellie Martin For those who participate in physical therapy, you might be aware that balance exercises are very helpful for those of us with Ataxia. Mayo Clinic says that balance exercises are especially important because they can help prevent falls and keep you independent. It can get boring Read More…
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