Pictured: some of the children affected by       v-ATPase genetic disorders

The v-ATPase Alliance is a 501c3 nonprofit organization made up of passionate and dedicated parents, caregivers, scientists, and advocates united by a common mission - to improve the lives of children and young adults affected by rare genetic mutations in the v-ATPase complex.

Jacob in 2019

Our family's journey began with the heart-wrenching realization that our son, Jacob, was among an ultra-rare group of patients facing the neurodevelopmental and epileptic challenges of ATP6V1A Encephalopathy. As only the fifth known case in the world at the time in 2018, we were faced with the frustration of having many questions but very few answers.  Their determination to make the best of the situation led my wife, Kristin, on a path towards cultivating that small global community and eventually co-founding the nonprofit Alliance with the goal to research and develop novel treatments for v-ATPase disorders. 

Jacob in 2024, heading out on a training run with his dad.

After a hugely successful campaign for the January 2025 race, our family and friends are once again training to participate in the January 2026 Chevron Houston marathon to increase awareness of this ultra-rare disease and raise critical funds for the v-ATPase Alliance. Caring for a child with lifelong disabilities is a marathon, not a sprint, and that's why this event in particular is so fitting to the cause. It also takes a village to raise a child, especially for families touched by a rare disorder. Will you be a part of that village of support by making a donation or joining us to walk or run in January? Your tax-deductible donation to Team Jacob's fundraising efforts will directly impact the research being undertaken in the quest for v-ATPase treatments. The positive ripple effect of your donation on the patients worldwide cannot be overstated. On behalf of all the v-ATPase families, thank you for your support!

Please help us share this fundraiser with your family and friends! Read more about the Alliance at www.vatpasealliance.org, or follow on Facebook, Instagram or LinkedIn @vatpasealliance. www.vatpasealliance.org

Jacob's mom and brother, cheering him on as his dad pushed him in the 2024 half marathon, where they were the first place Male Duo finishers!

If you'd like to join Team Jacob and Run for Rare in the 5k, half, or full marathon on January 10-11, 2026 please reach out to kristin@vatpasealliance.org. We would LOVE to have you on the team!

The v-ATPase Alliance is a registered 501c3 nonprofit organization. EIN: 93-4759423

                                                      The 2025 Team Jacob 5k runners