Hope for JoJo

Our daughter Josephine is fighting a rare genetic disease with no cure. Babies like JoJo may never walk, talk, or eat or their own and far too many die. Gene therapy could cure her, but we can't do it alone. Help us save JoJo & pave the way to treating millions of kids with 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. The hum of hospital machinery has become the soundtrack of her life.

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. For too many of these kids, the fight ends tragically in childhood. Some simply do not get the chance to grow up.

A Rare Break

SCN8A, like many rare diseases, is caused by a typo in our DNA. This rare typo is enough to "break" the whole meaning of a word and cause devastating disease. JoJo's rare break was a single letter change, found in fewer than 20 children worldwide. Help us turn a rare break like JoJo's into life-saving breakthroughs for millions of children everywhere.

For children with neurodevelopmental diseases, time is brain, and we are in a race to develop a breakthrough gene therapy that can correct JoJo's "break". We are not alone in this fight; dozens of the world's top physicians, scientists, and industry experts are donating their expertise to this cause. Our collective goal is to deliver this life-saving cure to JoJo and kids like her within the next 18-24 months.

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