You may have remembered some posts about the Ataxia Burpee Challenge fundraiser we were planning for June.Due to current circumstances with COVID-19, we decided to postpone the fundraiser until next June.It appears that things might start to re-open over here, but we don’t know what the repercussions of that will be yet and feel that […]
Courtney Ng will share how she stays active and how she is trying to increase awareness of Ataxia globally. Although I was born with this condition, I experienced symptoms starting when I was 19 and was officially diagnosed at 25 years old with ARCA 1 – Autosomal Recessive Cerebellar Ataxia Type 1. I used to […]
Here’s the story of Mary Sheetz. She’s got SCA8. Learn how she’s dealing with the challenges presented by her Ataxia. Mary lives in Portland, Oregon. 12 years ago, she was diagnosed with Spinocerebellar Ataxia type 8. However, if we look back to the 1980s, that’s when the process that would lead to her eventual diagnosis […]
For the Ataxia Profile this week we will be learning about the story of Chanda Huy. Chanda is working on trying to adjust and adapt to the diagnosis of Spinocerebellar Ataxia that she received a year ago. The form that she has is hereditary, passed down by her father. All of the simple things that […]
Linda Ng is a parent who has also adjusted to providing support in any way that is needed. Here is a peek into Linda’s experience. Her daughter, Courtney Ng was diagnosed at 25 years old with ARCA1 – Autosomal Recessive Cerebellar Ataxia Type 1.
Yesenia Ramos received a diagnosis of Friedreich’s Ataxia when she was 6 years old. She is now 23 and lives in Edmond, Oklahoma with her parents and an older brother who also has FA. Yesenia is very proud of her Mexican heritage. For Yesenia, the road to an early diagnosis began with multiple sprained ankles […]
Jodie Kawa knew from a young age her chances of having a dominantly inherited ataxia, SCA2. Since her diagnosis she has discovered new ways to contribute to helping others as she once was a teacher. She now is very active with the NAF and helps runs the Western North Carolina Ataxia Support Group. I […]
It is a great time to recognize that when we are looking for information we can rely on each other to find strategies that can be helpful. The Carole Arsenault story is a good reminder of this. Please read more about Carole’s journey with Ataxia below. Hello everyone. My name is Carole Arsenault and I […]
Living with Friedreich’s Ataxia can be extremely tough. It takes a special person to be able to cope with the challenges that it presents. This week we’re blessed to hear from Jake Thompson or JT about his journey with FA. Read on to discover Jake’s story.