Ella-Rose: Supporting Her Fight Against Friedreich’s Ataxia

Help Owen Run for Ella-Rose: Supporting Her Fight Against Friedreich’s Ataxia

We don't know exactly how much the family is going to need the more the better.

I have decided to take on an incredible challenge—a half marathon—to raise funds and awareness for Ella-Rose, an inspiring 8-year-old girl living with Friedreich’s ataxia (FA).

This genetic, progressive condition affects the nervous system and muscle coordination, but it hasn’t impacted Ella-Rose’s fighting spirit. We’re asking for your support to help herself and her family prepare for the challenges that come with this diagnosis.

What Is Friedreich’s Ataxia?

Friedreich’s ataxia is a rare genetic condition that primarily affects the nervous system and muscles. It causes progressive difficulty with movement and coordination, often resulting in issues with balance and walking. Over time, FA can also lead to complications such as scoliosis, diabetes, and heart disease, alongside potential impacts on speech, hearing, and vision.

While there is currently no cure for Friedreich’s ataxia, early intervention, therapies, and certain supplements can help manage symptoms and improve quality of life. Sadly, more advanced treatment options, such as gene therapy, are still awaiting approval in the UK.

About Ella-Rose

Ella-Rose is a bright, kind, caring and determined young girl who inspires everyone who knows her. Despite the challenges of Friedreich’s ataxia, she has embraced her diagnosis with remarkable courage. Recently, she even set up a ‘gym’ in her room, working through soreness and discomfort to strengthen her body. Her positivity and resilience remind us there is hope.

Ella-Rose is also an 8-year-old with a zest for life. She loves makeup, laughing with her friends, and has a cheeky sense of humour. Her diagnosis hasn’t changed her spirit, but it has created new hurdles for her and her family to navigate.

How Your Donation Will Help

The funds raised from Owen’s half marathon will go directly towards supporting Ella-Rose’s current and future needs, including:

Supplements: To support her overall health and muscle function.

Specialized Therapies: To help keep her strong and maintain her mobility for as long as possible.

Aids and Equipment: To ensure her comfort and independence as her condition progresses.

Home Adaptations: Preparing for the future by making the family home accessible and safe.

Right now, these are the only options available to Ella-Rose and her family while they wait for advanced treatments like gene therapy and nomlabofusp to become accessible in the UK.

Join me Owen in Supporting Ella-Rose

I am training hard for this half marathon, and it's the furthest Distance I have ever ran. This time I'm running for more than just fitness, I am running for Ella-Rose and everyone fighting Friedreich’s ataxia by raising awareness. Every step I take will bring us closer to helping Ella-Rose lead the fullest life possible.

I would be so grateful for your support—whether through a donation, sharing this fundraiser, or cheering Owen on as he crosses the finish line. Together, we can make a difference for Ella-Rose and others living with Friedreich’s ataxia.

Donate now and be part of this journey!

Thank you for your kindness and generosity. Let’s show Ella-Rose just how much love and support she has behind her.