Insieme contro Batten

Hope4U

United by hope,
united for life, led by love.

The Association

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A Journey of Hope

HOPE4U INSIEME CONTRO BATTEN was born from the coming together of parents, friends, and people who chose not to give up. At the heart of our mission is Rachele, an 8-year-old girl living with CLN3 Batten disease, a rare and devastating condition — but not one without hope. Together, we aim to turn pain into strength, fear into courage, and isolation into a living, supportive community.
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What is Batten disease?

Batten disease is a genetic, neurodegenerative disorder that appears in childhood. It often begins silently between the ages of 4 and 8, starting with vision loss and then progressively affecting cognitive and motor abilities. It leads to seizures, regression, and daily challenges. It is a disease that steals time and dreams, but not the determination to fight or the hope of building a possible future for those affected.
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Our Goal

HOPE4U INSIEME CONTRO BATTEN supports Rachele and her family in this race against time. We raise funds to access innovative treatments and to support research, but above all, we build a community rooted in closeness and care. Every voice, every gesture, and every contribution fuels a wave of hope that can become healing, strength, and possibility for tomorrow.
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To borrow words from my mom, diseases like Batten are rare…but hope should not be.

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— Taylor’s Tale, World Rare Disease Day

Her story

Rachele is 8 years old today.

She is a sweet, determined, and empathetic child with a love for cooking. She enjoys caring for animals and has a natural calling to look after the elderly, to whom she shows great attention and affection. Often strong-willed and very determined — and it is precisely here that her strength lies. About a year ago, she began to see the world as blurred… and then less and less. Today, her vision is almost completely gone, but not her desire to live fully — a drive that pushes her to keep going, to adapt, and to face adversity without giving up.

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Join us. Give hope. Fight Batten. Together 💙

If you are reading these words, you can be part of this hope.

You can support us with a donation via bank transfer:

Account holder: HOPE4U INSIEME CONTRO BATTEN APS

C.F.: 92022830548

IBAN: IT10V0344038480000000266600

Bank: Banco Desio

Donation purpose: Donazione