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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…
Saga of a CHAIR Prajakta Samant and Amit Patil When we hear a word “chair”, the first thing that comes to an Indian’s mind is electoral seat in politics. But don’t worry—I’m not going there today. To hell with politics. I’m here to talk about a very different kind of a chair. My mother was a teacher. As students, we would sit on benches while she sat on a big, sturdy chair. I used to Read More…
My Mother was diagnosed with a type of ataxia 20 years ago, no one knew what exactly she had. 10 years ago, I started researching about my mothers illness as I knew that whatever she had, was genetically passed on. So I made some appointments but soon realised that nobody Read More…
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…
