Hope for Jojo

Our daughter Josephine is fighting an ultra-rare disease with no cure. Babies like Jojo may never walk, talk, or eat or their own and far too many die. Help us fund the science that can save Jojo's life and create the "hero use case" to accelerate medical research for all rare diseases.

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Jojo has filled our lives with unimaginable joy —every smile, every tiny hand grasp, every infectious laugh made our hearts leap. But we have also known the terror of holding her tiny body, limp and blue after a seizure, willing her to breathe again. We’ve watched her scalp grow raw from repeated electrodes as she cried, her tiny hand grasping our finger, looking to us for help we couldn't give.

This is the agonizing reality of SCN8A: it's a catastrophic disease that relentlessly attacks a child's brain. It erases milestones, stealing the ability to walk, talk, or even play. Far too many children do not get the chance to grow up.

A Rare Break

Jojo’s devastating SCN8A disease is caused by a "rare break" in her DNA, a single-letter "typo" so rare it affects fewer than 20 children worldwide. Rare "n-of-1" diseases like JoJo's will never get blockbuster investments; they are fueled by the compassion of people like you who choose to step in and make a difference.

We've united the world's top experts for an 18-24 month sprint to develop a gene therapy, create a humanized mouse model, and leverage cutting edge AI to predict and derisk errors. Champion Hope for Jojo and drive a new era of AI-driven cures.

Today, every rare break journey starts from zero - a slow, expensive, heartbreaking gamble. We are changing that. We are building a platform where each patient's therapy becomes the foundation for the next, driven by shared data, transparent outcomes, and a predictive AI model for gene editing in the nervous system.

Join Jojo's Fight

Save transaction fees - make a tax-deductible donation via Benevity, DAF, or check

1. Corporate Match / Benevity
Visit our Benevity page for employer sponsored perks. When you donate through Benevity, you save us transaction fees and your employer & colleagues may match your donation. To find us on Benevity, search for "Hope for Jojo" or "Rare Village" and select our project cause: [Example]

2. Donor-Advised Funds (e.g. Fidelity, Schwab, Vanguard)
If you have a Donor-Advised Fund, you can recommend a tax-free grant directly. This is a highly tax-efficient way to give and saves us transaction fees. [Example]

Please direct the grant to our 501(c)(3) fiscal sponsor: “Rare Village Foundation”
In the designation or purpose field, please specify the grant is for “Hope for Jojo”

3. Want to write a check?
Make the check payable to Rare Village and indicate "Hope for Jojo" in the memo line. Mail to:
Rare Village Foundation
6808 Old Glory Ct.
McKinney, TX 75071

You will receive a receipt for tax deduction.

All donations are Tax Deductible via our 501(c)(3) fiscal sponsor, Rare Village Foundation.

4. Donate online via our secure portal