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Anyone who meets Jojo says she's magnetic. She's bubbly and social, and she loves to play. When she locks eyes with you, you feel like the most important person in the room.
Jojo was also born with SCN8A, a severe genetic epilepsy. When she has a seizure, she stops breathing, goes limp, and turns blue, and we pray she'll breathe again. Not every child with SCN8A does.
We still remember the silence as everyone quietly left the room so the two of us could hold our baby and cry, because we all knew in that moment that this wasn't just an everyday seizure anymore.
Jojo was in the hospital at least 10 times in her first year. Today she takes three medications, seven doses a day, and has 15 hours of appointments and therapy every week. She still wakes up every hour or two at night.
A Rare Break
A Rare Break
SCN8A attacks a child's developing brain. Children can lose skills they've already learned, even the ability to play. Too many don't get to grow up.
Jojo’s SCN8A is caused by a "rare break" in her DNA: a single-letter "typo" so rare that only a few dozen children worldwide are known to have it. Diseases this rare almost never attract pharmaceutical investment, so the research depends on families and donors; 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
Join Jojo's Fight
Save transaction fees - make a tax-deductible donation via Benevity, DAF, or check
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 with a payroll deduction, you save us transaction fees and your employer & colleagues may match your donation. Some companies (AbbVie, Apple, Boeing) also cover credit card transaction fees for their employees. 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 or donate stock directly?
Email us at gifts@rarebreak.org
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
Your generous tax-deductible donation will fund a cure for children like Jojo and accelerate critical research to save children with rare diseases everywhere.
Your generous tax-deductible donation will fund a cure for children like Jojo and accelerate critical research to save children with rare diseases everywhere.
Help Our Cause
Want to apply your skills to help save kids? We are seeking volunteers! Start your own fundraiser to cure SCN8A here!
Contact Us
For more info, email us at: info@rarebreak.org
The Devastating Impact of SCN8A DEE
For children with SCN8A Developmental Epileptic Encephalopathy, challenges are immense.
The Devastating Impact of SCN8A DEE
For children with SCN8A Developmental Epileptic Encephalopathy, challenges are immense.
Time for Jojo: Why We Can't Wait
Time for Jojo: Why We Can't Wait
Time is Brain. Every day counts in the race for a cure for Jojo and children like her.
Time is Brain. Every day counts in the race for a cure for Jojo and children like her.
Jojo's Unique Journey
Jojo's Unique Journey
SCN8A is an "orphan" disease, often overlooked by big pharma
<20 global cases of Jojo's variant
Every Moment Matters
Every Moment Matters
Lost developmental potential daily
Brain damage is permanent if we wait too long
Research Relies on You
Research Relies on You
Your generosity saves lives!
A Cure for Jojo & More: Our Path Forward
A Cure for Jojo & More: Our Path Forward
Your donation powers a strategic research plan to develop a cure within 18-24 months, with help from leading experts in the field. Learn more
Your donation powers a strategic research plan to develop a cure within 18-24 months, with help from leading experts in the field. Learn more
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