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I was diagnosed with SCA1 in 2010, five years ago I had to stop work due to it becoming too hazardous, I lost my ability to do everyday tasks like washing my car or cleaning the gutters, I cannot print or write anymore, sometimes my ability to sleep is compromises, Read More…
Hi, I’m Rochelle I am 60 years old mother of three adult children and grandmother to 3. All of my life even as a teenager I loved working with children. I began teaching early childhood education at 18. I gradually moved to advocating for children with special health care needs Read More…
What is a Randomized Controlled Trial (RCT)? Before a new drug or therapy can reach patients, researchers and regulatory agencies need evidence that it is safe and effective. One of the most reliable ways to gather this evidence is through a randomized controlled trial (RCT). A key challenge in medical Read More…
My story started about four years ago. It has been a long road. Finally on the 13th of August 25 I was diagnosed with Ataxia caused by a degenerative of my Cerebellum. I’m already using a walker in the house. Even with it I can’t walk more than about 30 Read More…
In June 2024, I had a massive hemorrhagic stroke caused by an AVM. I was 23 at the time and working out at the gym. The next 6 months I spent my time in hospitals and rehab. I continue rehab to this day. A little better everyday. When Were You Read More…
Written by Juan MatoEdited by Jacen Emerson A new drug may help steady movement and improve daily life for people with ataxia-telangiectasia. Small improvements in motor control can have massive effects for individuals living with ataxia-telangiectasia, a rare inherited neurodegenerative disease with no current FDA- approved treatment. Ataxia-telangiectasia, affecting 1 Read More…
The functional Scale for the Assessment and Rating of Ataxia (f-SARA) is a scoring system to track how much a person’s balance and movement are affected. The f-SARA is an updated version of the original scale for ataxia, also known as SARA, especially designed for Spinocerebellar Ataxia. Traditionally, doctors measure Read More…
Written by Ray Truant, PhDEdited by Celeste Suart, PhD How the gut helps clean the brain In 2013, neuroscientists used mouse models to show that during deep Random Eye Movement (REM) sleep, the structure of the brain changes, opens up like a sponge to help clear out metabolites and misfolded Read More…
I’m 50 years old from Portugal and work in the contact center industry from home. My journey with Cerebellar Ataxia really began in 2018 when I received my diagnosis. For a long time, my main struggle was just staying on my feet. I had a lot of trouble with my balance, and because I tended Read More…
My name is Amir Hossein Bagerzade. I am 26 years old, and for nearly nine years I have been living with a rare genetic disease. You may wonder why, after nine years, I am sharing my story now. The reason is simple: I live in a northwestern province of Iran, Read More…
