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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…
When scientists test a new treatment in a clinical trial, they need a reliable way to determine whether it is safe and effective. To do this, they rely on endpoints. Endpoints are clearly defined outcomes that are measured during a trial to help determine the effects of an intervention. Clinical trials usually include several types of Read More…
As a child I experienced hypnogogic states REM dysfunction and night terrors. As I go older I developed sleep attacks and falling. I went to a sleep specialist and was diagnosed w narcolepsy/cataplexy. I’ve the next few years, I lost my back ability. Then I developed Myoclonic seizures. My medication protocol was changed. (sleep disorder) Then my gait changed with periods of aphasia. Read More…
I am Lucas Marins, Brazilian, 31 years old. My grandfather died with ataxia SCA3, my aunt is completely paralyzed already, my mother is 64 years old and has SCA3, suffering with no balance, severe difficult to Walk, insomnias, slight difficult in speaking and other symptoms. Myself, I was diagnosed with Read More…
Levacetylleucine, sold under the brand name Aqneursa, is an FDA-approved treatment for Niemann-Pick disease type C (NPC). It is an oral medicine, approved by the FDA in September 2024, later approved in the European Union in January 2026. Its exact mechanism of action remains unclear, but it is believed to Read More…
Written by Tala Ortiz Edited by Celeste Suart, PhD Ever wonder if experiences early in life impact symptoms of a genetic disease? Researchers found that genetics isn’t the only thing to consider in SCA6 Does the environment play a role in genetic diseases? That is the question these authors aim to answer in the context Read More…
