ABOUT US

Welcome to v-ATPase Alliance, a passionate and dedicated community of parents, caregivers, scientists, and advocates united by a common mission - to improve the lives of individuals affected by rare genetic mutations in v-ATPase. Our story is one of resilience, hope, and unwavering commitment to bringing positive change to those living with these ultra rare diseases.

Our journey began with the heart-wrenching realization that our children were among the ultra-rare group of patients facing the neurodevelopmental and epileptic challenges of genetic variations in the v-ATPase complex. Faced with the frustration of having many questions but very few answers, our collective determination led us on the path towards empowering our community through support, research, and the creation of novel treatments.

At v-ATPase Alliance, our mission is threefold:

1. Build a Supportive Community: We strive to be a beacon of support for patients, families, and caregivers navigating the complexities of living with genetic mutations in the v-ATPase. We provide a platform for sharing experiences, resources, and invaluable emotional support.
2. Advance Scientific Research: We work for the advancement of research and understanding the underlying mechanisms of these mutations, leading to improved care for individuals affected by these rare diseases. We actively engage with medical professionals, researchers, and policymakers to raise awareness and promote positive change and seek partnerships with organizations and institutions that share similar missions to amplify the impact and reach of v-ATPase research. 
3. Develop Effective Treatments: Central to our mission is driving scientific progress. We collaborate with leading researchers and institutions to fund groundbreaking research initiatives focused on developing potential treatment options. We foster collaboration among researchers, drug developers, and regulators to accelerate progress for v-ATPase diseases and generate critical tools and resources to help therapeutic development (e.g., natural history study, biomarkers, etc.).

v-ATPase Alliance is built upon the collective strength of our community. We understand the unique challenges that come with rare diseases and the importance of finding solace in a network of like-minded individuals. Together, we form an unbreakable bond that inspires us to keep pushing the boundaries of what is possible for the betterment our children.

Whether you are a caregiver, scientist, supportive relative, friend or rare disease advocate, we invite you to join us on this remarkable journey. Together, we can work to improve the lives of individuals and their families affected by v-ATPase disorders. 

Together, we can bring hope to those who need it most.