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,...

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...

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%...

How it had started? As far as I can remember, I have always had trouble with my health. During my childhood, I had to go to the hospital frequently. I am Anoushka Speville, I am 28 years old and I come from Rodrigues Island, Mauritius(I know that it is not well known, but Rodrigues Island...

One day, you’re 17 and you’re planning for someday. And then quietly, without you ever really noticing, someday is today. And then someday is yesterday. And this is your life. John Green Does anyone else feel like this year is passing by quicker than any previous year?  I had this exact discussion with my acupuncturist...

Darcy’s story is a powerful reminder that even with a rare condition like CACNA1A mutation-related ataxia, you can still live a full and meaningful life. She inspires everyone by showing us that resilience, adaptation, and raising awareness are key to overcoming challenges. Discovering the Diagnosis Darcy’s journey to a diagnosis was a long and bumpy...

We pressure ourselves to fit into a particular ideal and be able to do certain things. For each of us, the standards vary. For the highly athletic person, perhaps it’s running X miles a day. For the average person who exercises, it may be the ability to lift X pounds on certain machines. For a NON-gym...

Imagine a world where the simple act of walking, balancing, or coordinating your movements becomes a daily struggle.Learning to live with a progressive condition is a harsh reality. As I get older, simple things that I used to take for granted are becoming more and more difficult. I know everyone with Ataxia and other movement disorders...