Jesse's cure for Friedreich's Ataxia

Jesse's cure for Friedreich's Ataxia Jesse is 25 years old and is fighting Friedreich's Ataxia, He was diagnosed at the age of 12. There is no cure for this life changing disease.

Friedreich's ataxia is a life shortening condition that causes progressive damage to the nervous system resulting in symptoms ranging from muscle weakness and speech problems to heart disease. Degeneration of nerve tissue in the spinal cord and of nerves that control muscle movement in the arms and legs. Most people with Friedreich's ataxia also develop scoliosis and are confined to a wheelchair.

12/22/2025

Living with Friedreich’s Ataxia is not a choice—but courage is.

Friedreich’s ataxia may affect balance, movement, speech, and strength… but it does not define a person’s worth, spirit, or future. It does not take away humor, intelligence, kindness, or the will to keep going when things get hard.

Every single day, people living with Friedreich’s ataxia show up to a world that doesn’t always meet them halfway. They adapt. They fight fatigue. They face uncertainty. And still—they live fully, love deeply, and inspire everyone watching.

Strength doesn’t always look like standing tall.
Sometimes it looks like getting back up.
Sometimes it looks like asking for help.
Sometimes it looks like refusing to give up on hope.

There is power in community. Power in research. Power in awareness. And most of all, power in reminding every person affected by Friedreich’s ataxia that they are seen, valued, and never alone.

Progress is happening. Hope is real. And every voice raised, every dollar donated, every story shared brings us one step closer to better treatments—and one day, a cure.

Until then, we keep showing up.
We keep believing.
We keep fighting—together.

Because Friedreich’s ataxia may shape the journey,
but it will never take the strength of the heart.

🤍 No one fights alone. Stronger together. 🤍

Exciting for you young ones 🩷
12/15/2025

Exciting for you young ones 🩷

Big news for the FA community in AU & NZ! 💫

Enrolment is now open for the BRAVE Phase 3 Paediatric Clinical Trial (Biogen-sponsored) for children aged 2–15 years.

This global study includes a Melbourne site at Murdoch Children’s Research Institute - now recruiting!✨

Read more here: https://www.fara.org.au/news/new-local-paediatric-trial-announcement

12/14/2025

We’re grateful to share that Jesse’s heart is still doing really well, with only very minimal change. He’s feeling good and staying positive, and he’s especially excited for Christmas and spending time with family. 🎄

Thank you to everyone who continues to check in, pray, and support us — it truly means so much.

12/09/2025
Jesse Strong🩷
12/08/2025

Jesse Strong🩷

Listen and make your own on Suno.

12/05/2025
We are selling bracelets for Jess they are $5 let us know if your interested
12/02/2025

We are selling bracelets for Jess they are $5 let us know if your interested

Life With Friedreich’s Ataxia — Our Reality 💔Some posts are hard to write… but this is our real life, a life that has ta...
11/30/2025

Life With Friedreich’s Ataxia — Our Reality 💔

Some posts are hard to write… but this is our real life, a life that has taught us resilience and strength.

My son Jesse is 25 and living with Friedreich’s Ataxia, a rare degenerative disease that has slowly taken away his ability to walk, feed himself, bathe, and do the everyday things most people never think twice about. Yet, in the face of adversity, he remains a beacon of hope and inspiration.

Watching your child lose their independence piece by piece is a pain that has fueled my determination to support him. I am in awe of his courage and perseverance.

But I’m trying to put into words the pride I feel.

Every day, Jesse wakes up fighting a battle inside his own body. He didn’t choose this. He doesn’t deserve this. And yet he faces it with more strength and courage than I’ve ever seen in any person. His determination is a constant reminder that we all have the power to rise above our challenges.

What people don’t see are the quiet moments:

The resilience he shows when his hands won’t move the way he wants.

The hope in his voice, even in the face of exhaustion.

The tears he sheds, a testament to his strength, not weakness.

The way my heart swells with pride while I stand strong for him.

Being his mom and his full-time caregiver is the hardest and most beautiful thing I’ll ever do. I would give anything to take this from him. But since I can’t, I fight beside him — every single day. Together, we face each challenge with faith and hope.

Friedreich’s Ataxia is cruel. It changes everything. But it will never change the love we have, the hope we hold onto, or the strength Jesse shows the world. His spirit remains unbroken, a shining example of the human capacity to persevere.

Thanks Uncle Bill and aunt Gwen raiders game was awesome
11/05/2025

Thanks Uncle Bill and aunt Gwen raiders game was awesome

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Our Story

Friedreich's ataxia is a life shortening condition that causes progressive damage to the nervous system resulting in symptoms ranging from muscle weakness and speech problems to heart disease. Degeneration of nerve tissue in the spinal cord and of nerves that control muscle movement in the arms and legs. Most people with Friedreich's ataxia also develop scoliosis and are confined to a wheelchair. There is no cure for this life changing life shortening disease.