What is BBSOAS and NR2F1?

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. Our 2026 Fundraising Goal is $320,000

What the NR2F1 Foundation Does

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 a full and empowered life. 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.

Want to Donate to a Specific Campaign?

Current active campaigns include:

https://givebutter.com/halani

https://givebutter.com/DawsonArmy2026

https://givebutter.com/VincentB2026

Set Up Your Own Fundraiser Page

Click 'Fundraise' above in the 'Team Members' section above
Create your personal team page (instructions below).
We recommend adding a short personal story — why you’re fundraising, your child’s journey, or what this research means to your family.
Share your page link with your network (share on Facebook, Instagram, LinkedIn, TikTok, WhatsApp, or by email.)
Consider making a gift of any size to show your support.

I’ve recorded a simple 2-minute walkthrough video showing exactly how to create your page — click HERE to watch.

Givebutter accepts donations from almost every country and currency, so please feel free to share this worldwide.

* We take privacy seriously. We do not sell, rent or otherwise disclose personal information collected by our site to third parties.

As a Foundation we want to speed up the understanding of BBSOAS and most importantly find treatment for our children and families.

By NR2F1 FOUNDATION

As a Foundation we want to speed up the understanding of BBSOAS and most importantly find treatment for our children and families.

Team Leaderboard

NR2F1 Foundation Fundraisers