Why is this fundraiser so important to us?

On 10 October 2025, just weeks before her first birthday, Bea was given a life-changing diagnosis: BBSOAS. After months of invasive testing, we finally had an explanation for her developmental delays and visual challenges, but also a reality we weren’t prepared for.

BBSOAS is an ultra-rare genetic condition caused by a mutation in the NR2F1 gene. Around 500 people worldwide are known to be affected. It can bring profound challenges, including developmental delay, seizures, autism, intellectual disability, and visual impairment. We were told there is no treatment, and certainly no cure.

Determined not to accept that as the end of Bea’s story, we searched for hope. That’s when we found the NR2F1 Foundation, a global organization working tirelessly to fund research and drive progress towards treatment for children like our Bea.

On 21 June 2026, our friends, family, and members of the BBSOAS community will take on the Norwich Triathlon to raise vital funds for this work.

But we can’t do it alone.

This year alone, the NR2F1 Foundation needs to raise $320,000 to continue its groundbreaking research, work that could transform Bea’s future.

Every donation, no matter the size, brings us one step closer to answers, to treatments, to hope.

Please support us if you can. Together, we can give Bea, and children like her, the chance they deserve.

Thank you for your kindness and generosity.

The Carrow Family

(PS. For now, UK donations are processed in U.S. dollars, with GBP giving coming soon—but wherever and however you give, it all counts toward the same goal.)

What the NR2F1 Foundation Does

BBSOAS (Bosch-Boonstra-Schaaf Optic Atrophy Syndrome) is a rare, complex neurodevelopmental condition caused by variants in the NR2F1 gene. It affects vision, development, and often causes seizures or epilepsy.

Today, there are only ~500 diagnosed individuals worldwide — yet families urgently need answers, treatments, and hope.

Research is the only way forward.

The NR2F1 Foundation is a global, patient-led nonprofit dedicated exclusively to families affected by rare NR2F1 gene variants.

Our vision is that every single family and individual living with rare NR2F1 variants will live full, empowered lives. Our mission is to empower families and individuals living with rare NR2F1 variants through education, advocacy, and research.

Research the NR2F1 Foundation Funds — Around the World

The NR2F1 Foundation currently invests in BBSOAS research programs in Germany, France, and Italy, and in 2026 will open the first-ever dedicated BBSOAS research laboratory in the United States at Cincinnati Children’s Hospital Medical Center, led by Dr. Veeral Shah.

This U.S. lab — funded entirely by the Foundation — is a major milestone for families.

The 2026 Funding Goal: $320,000

Your donation helps fund:

NR2F1-exclusive post-doctoral researchers in Germany and Italy
The first dedicated BBSOAS research lab in the U.S.
The first-ever BBSOAS drug repurposing observational study
The 2026 BBSOAS Family & Scientific Conference

These projects move families closer to real treatments.

Help Lead the Way to Answers

For families living with BBSOAS, research means hope.

Your support fuels the science that will change lives.
Please donate today and help lead the way to answers.

Tri4Bea - Norwich Triathlon 21 June 2026

A fundraiser in support of the NR2F1 Foundation - to help find a treatment for BBSOAS

Our Competitors and Fundraisers

Team Members