Living with ataxia presents a multitude of challenges beyond the physical realm, often overshadowed by the visible symptoms. In this candid narrative, Kate shares her profound impact of ataxia on mental health, shedding light on a facet of the condition that is frequently overlooked. The journey begins with the onset of symptoms during university years,...

The advance of technology is based on making it fit in so that you don’t really even notice it, so it’s part of everyday life. Bill Gates Living with a neurological condition like ataxia can be challenging, as it affects coordination, balance, and muscle control. However, advancements in technology have introduced innovative solutions that can...

Whatever you do you have to keep moving forward. Martin Luther King In my world, life is a continuous journey of change.  I get it.  Change can be scary, and most folks would do just about anything to avoid it.  However, I firmly believe that real personal growth and discovering who you truly are require...

Often misdiagnosed, misunderstood, and unseen. A sufferer writes of a silver lining in his tale of swoon and gloom. Timothy Wahl In this compelling narrative, Tim Wahl shares his poignant journey with Episodic Ataxia, a hidden impairment that dramatically altered the course of his life.  From the innocence of childhood to the challenges of adulthood,...

Lily shares the lessons she’s learned from living with a disability. She discusses the challenges of physical limitations and the surprising wisdom and perspective she’s gained. Lily’s story is one of resilience, humility, and a commitment to personal growth. It reminds us that we can all learn by listening to others with similar stories. Lesson...

Life is a work in progress. Jeff Rich For me, Thanksgiving is not just a holiday but a cherished tradition, a time when the hustle and bustle of daily life takes a backseat to embrace the simple yet profound act of giving thanks. Everything about it, from the rich aroma of a roasting turkey and my...

This a poem I wrote for Brian Oliveira my husband who passed away from complications associated with Spinocerebellar Ataxia Type 3 (SCA3).  Dedicated to Brian OliveiraWritten by Sari Oliveira. Imagine for a second what it would be like:Just to live? Imagine having your entire life where living was exhausting?But you still showed up and did...

Against the assault of laughter, nothing can stand. Mark Twain We all have those days when life feels like a drag.  When you can’t remember the last time you laughed so hard, your sides hurt.  For me, that’s a sign that something’s off.  Whether it’s work stress or too much serious stuff, we could all...

I translated this article from the Spanish version.:  READ HERE Paola Coto’s life changed starting in December 2022. She received a diagnosis of cerebellar ataxia at the age of 50. This stands as one of the rare diseases in the world. Only 5 out of every 100,000 people suffer from it. A lack of coordination...

October 27, 2023 WASHINGTON, D.C. – This week, U.S. Reps. Mike Kelly (R-PA-16), Congresswoman Doris Matsui (D-CA-07), Reps. Neal Dunn (R-FL-02), and Mike Thompson (D-CA-04), introduced the Providing Realistic Opportunity To Equal and Comparable Treatment for Rare (PROTECT Rare) Act. This legislation will support rare disease patients. In getting evidence-based, medically necessary care covered by their health insurance. Over 90%...