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...

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%...

Lisa Antonelli Cole’s journey to an ataxia diagnosis was marked by years of misdiagnosis and frustration.  After experiencing symptoms such as dizziness, lack of coordination, and imbalance for years, Lisa underwent a series of medical appointments, only to be dismissed with treatments for vertigo and chronic anxiety. It wasn’t until a cardiologist recommended she see...

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...

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...

Megan’s story is a true inspiration. She’s faced many challenges living with type 1 ataxia, a progressive neurological condition, but she’s never given up. She’s shown incredible strength, perseverance, and hope. Discovering the Diagnosis Megan’s story started with subtle symptoms that most people would ignore.  Like many people with Ataxia, her balance and coordination problems...

In the realm of managing movement disorders, telehealth has emerged as a crucial resource, particularly during the COVID-19 pandemic. Recent research indicates that over 60% of individuals living with Parkinson’s disease have embraced virtual visits with their physicians, marking a significant increase from previous usage rates. Beyond Parkinson’s disease, patients grappling with various movement disorders...