by  v-ATPase Alliance

$3,763.90

Raised

Donations

$3,000

Goal

The v-ATPase Alliance is a 501c3 nonprofit organization co-founded by our daughter, Kristin. It is 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 daughter and son in law’s journey began with the heart-wrenching realization that our first grandchild, 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, they were faced with the frustration of having many questions but very few answers. Their determination to make the best of the situation led 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. 




Karen and grandson, Jacob, in 2025. We will be joining Team Jacob this year and participating in the January 2026 Chevron Houston Marathon by walking in the 5K to increase awareness of this ultra-rare disease and raise critical funds for the v-ATPase Alliance. Other members of the team will be running in the half marathon (including our son in law, Dave, pushing Jacob) and the marathon. 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, we thank you for your support!!


Read more about the Alliance at www.vatpasealliance.org, or follow on Facebook, Instagram or LinkedIn @vatpasealliance. www.vatpasealliance.org


Dave and grandson, Jacob, with balloons celebrating Rare Disease Day.



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

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



                    

     We can’t wait to join the 2025 Team Jacob 5k Runners this coming January!



The v-ATPase Alliance is a 501(c)(3) nonprofit organization formed by parents, caregivers, scientists, and advocates united to improve the lives of people affected by rare genetic mutations in the v-ATPase complex. With a mission to build a supportive community, promote scientific research, and develop effective treatments, the Alliance provides resources, emotional support, and advocacy while driving collaborative research to create innovative therapeutic solutions. EIN: 93-475942
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Anonymous

donated

$2,000

Way to go Karen and Dave! We know how much you love Jacob, and are happy to support the efforts of the Alliance.