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
Aude J
Note: Aude submitted her story in French. ChatGPT was used to translate her submission. The translation may not be accurate. We will include her submission Read More…
Sandi G
I am pleased to share some exciting news with you. I am a 67-year-old woman with a diagnosis of SCA8, and for the first time Read More…
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I’ve had balance and coordination issues my whole life – but I really started noticing it 10 years ago. I think the stress of myself Read More…
Tyler
My grandmother died prematurely from ataxia when I was just a baby, 26 years ago. Now today, my aunt has severe SCA and my mother Read More…
Tracy B
My paternal grandfather had a wide gait and difficulty walking and talking. We were told it was like “hardening of the arteries in the brain.” Read More…
Pinalben “Pinky” Patel
A Wheelchair is Not The Endgame By Pinalben “Pinky” Patel I’m sorry, but I don’t consider wheelchair users disabled. I am a very happy person Read More…
