Advancing research. Supporting families affected by SMG9 deficiency. Building a future of answers, treatments, and hope.
We fund scientific discovery to better understand SMG9 deficiency and accelerate the path toward meaningful treatments.
Explore Our Research →We walk alongside families with reliable information, connection, and advocacy so no one has to face this rare condition alone.
Resources for Families →Every gift, every collaboration, and every shared story brings us closer to answers and a future with real treatments.
Ways to Get Involved →Zoja Research Foundation exists to fund patient-centered research into SMG9 deficiency and to support the families living with this rare genetic condition.
We bring together scientists, clinicians, and families with one shared goal: to uncover answers, advance potential therapies, and make sure no family has to navigate this journey alone.
Our work is rooted in both rigorous science and deep compassion. Progress in rare disease research depends on focused investment and collaboration — and that is exactly what we are here to drive.
SMG9 deficiency is a rare genetic condition with limited existing research and no established treatments. We focus our efforts on the areas most likely to move the field forward. Read our SMG9 overview →
Supporting exploration of strategies such as AAV-based delivery and readthrough approaches that could one day address the underlying genetic cause.
Helping develop cellular and animal models so researchers can better study SMG9 function and test potential treatments safely and effectively.
Building partnerships with academic labs and research institutions to share knowledge, reduce duplication, and accelerate progress for this rare condition.
If your family is affected by SMG9 deficiency, you are not alone.
We are here to help you find reliable information, connect with others who understand, and advocate for the research and care your family deserves. Whether you are newly diagnosed or have been on this path for years, our door is open.
Rare conditions can feel isolating. Our goal is to make sure families have a place to turn — for knowledge, for community, and for hope.
Connect With UsProgress in rare disease research depends on people who choose to act. There are several meaningful ways to help.
Your gift directly supports research into SMG9 deficiency and helps sustain the families who need answers most.
Make a Gift →Help raise awareness. Sharing information about SMG9 deficiency and our mission brings new supporters and researchers into the work.
Researchers, clinicians, and organizations interested in collaboration are warmly invited to reach out.
Contact Us →Zoja Research Foundation was created out of a deep need for answers. SMG9 deficiency is rare, under-researched, and often leaves families searching for guidance with few places to turn.
We believe that focused research, combined with genuine support for the people living with this condition, can change that. Our foundation exists to fund the science, connect the community, and keep hope moving forward — one discovery, one family, and one partnership at a time.
Have a question, want to collaborate, or need support? Send us a message — we read every one.
Your message has been sent. We’ll get back to you as soon as we can.
Or email us directly at info@zojafoundation.com
Every discovery brings us closer to treatments. Every family gives us strength. Every gift makes hope possible.
Donate NowZoja Research Foundation is a 501(c)(3) nonprofit. Donations are tax-deductible to the extent allowed by law. EIN: 42-3928648.
