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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)
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Jai Gupta

Hi I am a 62-year-old Indian male living in New Delhi, India. My discovery of Ataxia was quite by accident. I suffer from Essential Tremors and the doctor suggested a gene test about 15 years back. The SCA 12 gene was dominant, but since it was more an ET diagnosis, I forgot about it. About 2 years back, I got an MRGFUS done. It is after that, that my ataxia increased. Currently, my gait ataxia has increased and I use a rollator to move around. I also have voice tremors, which have impacted my speech.

When Were You Diagnosed? Which Type (If Known)?

Father and grandmother. Gene testing was not known then.

How Has Ataxia Impacted Your Life?

Yes. I cant walk without a walker, dance or have independent movement. But I am a national level swimmer and swim effortlessly.

What is One Thing You’d Like the People to Know About Ataxia?

Go to a good neuro physio.

Share Your Advice – How Can Others Support Someone with Ataxia?

Patience.

What is Your Ataxia Story?

As an organization dedicated to improving the lives of those affected by Ataxia, we believe that each story has the power to inspire, connect, and empower others. We invite you to share your personal Ataxia journey with us.

Are you here to read the personal stories, but haven’t yet joined as a member? We hope you find comfort in reading about the experiences of others on their Ataxia journey. We invite you to join as a member to receive a new member story each month. It’s free, and you’ll be kept up-to-date on the latest developments in the Ataxia community. 

Recent Member Stories

Adam Nelson

I grew up in a small & rural town of about 3,500 people in central Minnesota. I was raised in a blue-collar middle class home, Read More…

Lim Siah Gim

My challenge and journey with Ataxia I was born youngest in a family of 11. From teen I witnessed my father (who was about 50 Read More…

Shawn Davis

Why I Wrote a Children’s Book to Explain Ataxia Well, it turns out your brain’s cerebellum is super important… A couple of years ago I Read More…

Roberta C

I am the mother of a child with SCA (type 14). My daughter who is now 12 had her first symptom when she was 5. Read More…

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