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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…
Written by Anastasiya Potapenko Edited by Asmer Aliyeva Tiny tags, big impact: new research reveals chemical tags on ataxin-3 protein influences its behavior and may contribute to brain cell death in SCA3. The genetic cause of spinocerebellar ataxia type 3 (SCA3) was discovered over three decades ago. Since then, scientists Read More…
(The Hauser Lab Back row, left to right: Linus Wiora, Stefan Hauser, Jacob Helm, Hariharan Menon, Luisa Baraban, Anabel Dickemann, Egemen Turkyilmaz. Front row, left to right: Lukas Senftleben, Natalia Vingut, Benedikt Meyer, Amelie Leonhardt, Clemens Sauter, Till Stoltenow. Not pictured: Yvonne Schelling, Melanie Kraft, Ludger Schöls) Principal Investigator: Stefan Hauser, PhD (Dr. rer. nat.) Location: German Center for Neurodegenerative Diseases, Eberhard-Karls-University of Tübingen, Tübingen, Germany Year Founded: 2023 What Read More…
“So what we think you have is something called autoimmune cerebellar ataxia.” Cool. Cool. Cool- No idea what that is. Countless blood tests, a few MRIs and a couple hospital visits later looking for answer to all the issues I suddenly had but the answer I got was something I knew nothing about. Even the Read More…
