Develop Gene Therapy to Save Kids Like JoJo
Can one act of kindness change a life forever? For our daughter JoJo, it can. She is fighting a rare genetic disease, and gene therapy is her only hope to walk, talk, and grow up. By funding a cure for SCN8A, you also create a path to save millions of other children with rare diseases.
Hope for JoJo
Her laugh is the most beautiful sound in the world. But a ticking clock threatens to silence it forever.
In her few short months, our daughter 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.
A devastating disease
This is the agonizing reality of SCN8A. It's a catastrophic genetic disease that relentlessly attacks a child's brain. It erases milestones, stealing the ability to walk, talk, eat or play. For too many of these children, the fight ends tragically in childhood. Some simply do not get the chance to grow up.
Hope for JoJo
Our mission is to create a validated approach that can be replicated for hundreds of other neurological disorders. The cure is now within reach thanks to a historic convergence of scientific breakthroughs: parent-led efforts have taken similar therapies to clinic in under three years (Nature Medicine, 2024), personalized gene editing has been deployed in months (NEJM, 2025), and our specific strategy has already been validated in SCN8A mouse models (bioRxiv, 2025).
We've been incredibly fortunate to have the guidance of scientific luminaries like Dr. David Liu (the inventor of base editing) and rare-disease innovator Terry Pirovolakis, who helped us map out this pathway to a first-in-human clinical trial. We hope you will join us.
The science exists. The team is ready. The only thing standing between Jojo and a future is the funding to make it happen. Rare diseases like JoJo's don't get blockbuster investments; they are fueled by the compassion of people who choose to step in and make a difference.
Your tax-deductible donation to the "Hope for JoJo" project will accelerate this critical research. To learn more or to contribute, please visit our website www.rarebreak.org or email info@rarebreak.org. Thank you!
Frequently asked questions
Is my donation tax-deductible? Do I get a receipt?
Do you offer corporate matching or perks?
Is my donation secure?
Join JoJo's Fight
Save Us Transaction Fees if you make a tax-deductible donation via Benevity, DAF, or check
1. Corporate Match / Benevity
Find us on your employer's Benevity page: Search for "Hope for JoJo" or "Rare Village" and select our project cause: [Example] Please indicate "Hope for JoJo" in the comments.
2. Donor-Advised Funds (e.g. Fidelity, Schwab, Vanguard)
If you have a Donor-Advised Fund, you can recommend a tax-free grant directly. Please direct the grant to our 501(c)(3) fiscal sponsor: “Rare Village Foundation” and in the designation or purpose field, specify the grant is for "Hope for JoJo": [Example]
3. Want to write a check?
Make the check payable to Rare Village and indicate "Hope for JoJo" in the memo line. You will receive a receipt for tax deduction.
Rare Village Foundation
6808 Old Glory Ct.
McKinney, TX 75071
This is where her story becomes your story. You are the missing piece. Your support will directly fund the science that can give Jojo her life back.
Please, help us give our daughter, and children like her, the chance to grow up.
Medical research is a complex journey with a non-guaranteed outcome. The costs listed are good-faith estimates based on quotes and standard industry costs for pre-clinical therapeutic development. They are subject to change as the project progresses. We are committed to complete transparency and will provide regular updates on how these funds are being utilized.