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.

    Peyton during her long stay at the Minnesota Children’s           

Our daughter Peyton’s journey began when we noticed she was delayed with almost all of the “normal”milestones. She wasn’t walking, crawling, talking, sitting up, along with many other things. For a while, her doctors gave us a “cerebral palsy” diagnosis, and thought she just had developmental delays. Then, one day, she had her first seizure at the age of 7 years old. That’s when everything began to unravel, and Peyton began to regress more than we had ever anticipated. For safety from seizures and a high risk of falling, Peyton got her first wheelchair. She also had a mic-key g tube placed from not wanting to eat. It was a lot, and our family had way more questions than we did answers. A few months later, we got the diagnosis of ATP6V1A. Peyton was among an ultra-rare group of patients facing the neurodevelopmental and epileptic challenges of ATP6V1A Encephalopathy. Literally only a few other known cases around the world existed when we found the ATP6V1A Facebook group❤️  Now our group has grown to the v-ATPase Alliance for those affected by v-ATPase genetic disorders.

     Running for Rare- Just after completing Grandmas 

                              Marathon 2024.

In just two months, Team Peyton will partner with Team Jacob 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 the team to walk or run in January? Your tax-deductible donation 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 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