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When faced with a serious illness and no effective treatment, patients may look to experimental therapies as a last resort. Normally, patients can only access experimental drugs or other investigational medical products through clinical trials. Unfortunately, not everyone can access a clinical trial when they need it. Some live too far Read More…
A 29-Year Journey to the Truth My name is Anamaria Mitre, I am from Zalau, Romania, and I am 42 years old. If you saw me today, you would find me enjoying the quiet joys of life. I love reading, watching movies and TV series, solving crosswords, and playing Rummy. Although I don’t drive, Read More…
When Mark Minkin signed up for Xtreme Hike, he wasn’t just taking on a mountain. He was taking on a challenge that would honor his wife and help raise awareness for everyone living with Ataxia. Along the way, he discovered something even bigger. “The views were spectacular, the encouragement from Read More…
Enhancing Community Through Professional Support For decades, NAF Support Groups have provided a welcoming place for people living with Ataxia, caregivers, family members, and loved ones to connect with others who understand their journey. Led by dedicated volunteer Support Group Leaders, these groups offer encouragement, shared experiences, and meaningful community. Read More…
Written by Ross Pelzel Edited by Dr. Larissa Nitschke New mouse studies show that mutant ataxin-2 causes dramatically more damage in older animals, revealing aging as an independent driver of disease severity In Afonso et al. 2022, the authors set out to understand how age influences the development of symptoms in spinocerebellar ataxia Read More…
My story started in 2016 with double vision and eye movements. I went to the neuro ophthalmologist who suggested fixing my problem with Yankee my glasses down over my nose! So much for seeing him! The issue continued and I went to a neurologist who tested me for myasthenia gravis. Read More…
Guest Author: Pinalben “Pinky” Patel My vision has never been 20/20. Okay, maybe it was up until my preteen years. This disease I have affects the eye muscles and nerves as well. In honor of the ADA anniversary, I’m sharing this article previously published in Breath & Shadow magazine. I Read More…
Why do we need mouse models for disease research? Mouse models are crucial for understanding human diseases. They allow researchers to study how diseases develop and to test potential treatments in ways that wouldn’t be possible in humans. But how do scientists create mouse models that mimic specific diseases? One widely used Read More…
When I had my tinnitus investigated in 2007, a balance disorder was discovered. I was put in touch with a neurologist who suspected something called Ataxia. I have had poor balance my whole life and have had difficulty with certain games and sports. Music and art were my salvation. I Read More…
Written by Yujia Li Edited by Celeste Suart, PhD Walking test in a hospital is not the same as walking at home. Wearable sensors show that real-world walking is more variable than in the hospital. We don’t usually think about how we walk until walking starts to feel different. Walking actually takes more effort than we realize. In spinocerebellar ataxia (SCA) patients, changes Read More…
