NAF has launched a petition on Change.org calling on the FDA to prioritize treatment options for rare diseases with urgent unmet needs, including Spinocerebellar Ataxia (SCA).
SIGN THE PETITION
My Ataxia journey started some years ago. Even before I was diagnosed, my wife commented that I walked like “Tipsy Mc Staggers”, and I had balance issues that I attributed to a ‘wonky’ knee. I spent about 50 years working in the education field as a teacher, assistant principal, math Read More…
My name is Julie Guillot, and my son, John, has Ataxia. John’s journey began on January 19, 1998, just a few weeks after he was born. As a newborn, he was admitted to the hospital with RSV and had routine blood work performed. The blood work showed that his platelet counts were low, Read More…
Guest Author: Ellie Martin Traveling can be stressful, but it gives us the opportunity to go exploring. Whether it’s traveling to meet a friend, going on vacation, or traveling for work, it offers us to explore new cultures, meet people, and create memories. For individuals with Ataxia, traveling can present Read More…
In clinical research, scientists design studies to learn more about diseases and answer questions about new treatment options. Interventional clinical trials are used to better understand the safety and effectiveness of a new drug or medical device. Observational clinical trials help researchers learn more about how diseases develop over time Read More…
My name is Terrence A Reed Jr, retired U.S. Army. I also served in four combat zones (1 Afghanistan, 3 Iraq). Now that I think back, I think I first noticed while still serving on active duty on Schofield barracks in Hawaii. We did a lot of physical training, and Read More…
After completing my residency training in Neurology in Italy, I pursued a PhD in Clinical Neuroscience, which solidified my commitment to both clinical practice and research in the field of movement disorders. Throughout this period, my work focused on three key areas: (a) the clinical phenomenology and genetic underpinnings of Read More…
Guest Author: Ellie Martin Over the years, technology has become a widely used tool for therapeutic programs and rehabilitation research. By replicating real-life scenarios in a controlled environment, simulation training offers a safe and effective way to assess and improve balance skills. The advances in technology have become a good Read More…
I have a genetic disorder called Batten Disease-CLN2. Doctors don’t know why I didn’t start showing symptoms until I was in my forties- this usually only happens to very young children. There is no cure but there is a treatment for the type of Batten Disease I have. I had Read More…
I was a high school baseball coach for 25 seasons and had a successful 20 years in as the Public Address announcer for all the programs football and basketball games – both boys and girls. About five years ago, I sold my lucrative Financial Planning practice of 33 years and Read More…
Guest Author: Ellie Martin Tai Chi is an ancient Chinese martial art that has been around for thousands of years and has evolved into a practice focused on enhancing balance, harmony, and well-being. Tai Chi consists of a series of slow, flowing movements that are performed with deep breathing and Read More…
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