Beyond Primrose ZBTB20 Foundation
Advancing Research...Uniting Families... Changing Futures
We are building the research, resources, and hope that Primrose Syndrome families have never had.
Your donation will fuel real science, real connection, and a future where every Primrose child has support, answers, and a chance to soar beyond their diagnosis of Primrose Syndrome.
Spread the word about Beyond Primrose ZBTB20 Foundation
and help our kids soar toward a brighter future!
About Beyond Primrose: ZBTB20 Foundation
Primrose Syndrome is caused by a mutation in the ZBTB20 gene. It leads to intellectual disability, motor and speech delays, seizures, hearing and vision loss, endocrine dysfunction, low muscle tone, and progressive muscle wasting.
Primrose is a progressive neurodegenerative condition—meaning symptoms steadily worsen over time, bringing serious, life-altering medical challenges.
Today, we have no treatment, no roadmap, and very little research. Families are told, “there’s nothing we can do” But our community refuses to accept that.
We’ve united with researchers, clinicians, and partners who are determined to change the future for our children—before more time is lost.
Your donation becomes part of a global effort to fight for answers, treatment, and hope—and to push urgently needed research forward for every child living with Primrose Syndrome.
What Your Support Makes Possible: We’re building the first coordinated research effort for Primrose Syndrome: here's our 2026 goals
📘 Primrose Registry: Creating an international IRB-approved registry to collect real patient data and guide future clinical trials.
📚 Natural History Study: Laying the groundwork for a multi-year study to understand how Primrose changes over time.
🧬 iPSC Cell Line: Developing stem-cell models to study the disease and test potential therapies.
🔬 Functional Studies: Identifying how ZBTB20 mutations affect the body and where treatments can target.
💊 Drug Repurposing: Screening existing medications that might help children with Primrose Syndrome now.
⭐ What It Costs: We are collaborating with researchers and scientists across leading academic institutions, biopharma groups, and rare-disease research organizations. These are the real costs of launching the first coordinated research effort for Primrose Syndrome
📘 Primrose Registry: $15,000–$25,000
📚 Natural History Study: $200,000 per year
🧬 iPSC Cell Line: $25,000–$50,000 per cell line
🔬 Functional Studies: $20,000–$25,000 per assay
💊Drug Repurposing: $30,000–$50,000 per child; $75,000 per cohort
Projected cost for 2026: $375,000–$425,000
Beyond Primrose ZBTB20 is filing for 501(c)(3) status. To provide tax benefits to our donors, we are operating under the fiscal sponsorship of Rare Village Foundation, a 501(c)(3) nonprofit.
Your donation is tax deductible within U.S. law guidelines.
If you would like to write a check to avoid the processing fee, please mail to the address below:
Rare Village Foundation 6808 Old Glory Ct. McKinney, TX, 75071
Memo: Beyond Primrose ZBTB20 Foundation