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Anna Santoro

My name is Anna Santoro and I am the stay-at-home mom of three boys and the primary caretaker to my mom, who has Ataxia type two. My objective is to share our Ataxia story, raise awareness, and provide other caregivers like myself with management tools to help care for their loved ones. This journey is not only about my family, but about all Ataxia patients and their families, both present and past.

When Was Your Family Member Diagnosed? Which Type (If Known)?

My mother was diagnosed roughly 20 years ago.

How Has Ataxia Impacted Your Life?

The impact on our lives has been profound, as my mother requires constant care and assistance. Simple daily tasks like dressing, brushing her teeth, bathing, and using the toilet present significant challenges for her.

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

I want to convey to everyone affected by Ataxia, as well as their families, that it’s possible to live with this condition and not merely exist. With some modifications and assistance, you can continue to lead a fulfilling life. There is life beyond Ataxia.

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

Schedules and routines have helped my mother dramatically. Please follow our journey on Instagram at the_ataxia_caregiver.

How Has NAF Helped You or Your Family?

NAF has helped our family by supporting and giving guidance on this new journey that we face.

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

Susan Harris

Chapter 1: In the beginning I wasn’t always this way. Growing up the daughter of a military man I can honestly say red, white and Read More…

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Anna Santoro

My name is Anna Santoro and I am the stay-at-home mom of three boys and the primary caretaker to my mom, who has Ataxia type Read More…

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Korkut Alp

Note: Korkut submitted his story in Turkish. Google Translate was used to translate his submission. The translation may not be accurate. We will include his Read More…

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David Beavan

When I was a teenager I remember my father used to weave a little when he walked. We played a lot of golf, and he Read More…

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Jerry’s Story

I’m actually reluctant to tell my story as it’s far from positive. Currently my tremors are more disabling than my balance issues, which are dreadful. Read More…

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Parna Mukherjee

I was born in a family with SCA2 back in India. My father had the symptoms of Ataxia as well as all his five siblings. Read More…

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