We are excited to announce the second annual Dawson's Army Walk for BBSOAS in Locust City Park, NC on Saturday March 7, 2026 at 10am.

This fun community event is being held to benefit the NR2F1 Foundation.

This event has kindly been approved by the City of Locust.

Our Son Dawson was born with a rare genetic disorder of the NR2F1 gene, called BBSOAS.

BBSOAS, also known as Bosch-Boonstra-Schaaf Optic Atrophy Syndrome, is an ultra rare neurodevelopmental disorder caused by a disruption in the NR2F1 gene. BBSOAS is characterized by a wide array of clinical features, but the most common are visual impairment, epilepsy/seizures, autism, developmental delay, and intellectual disability. BBSOAS is estimated to impact approximately 1 in 250,000 babies born each year.

Early on, we struggled to find answers as to why our son was not developing at the rate of a typical child his age. After many therapy sessions, specialist and genetics appointments we found that Dawson was diagnosed with BBSOAS. Dawson is now 6 years old with global developmental delay, uses limited vocabulary, sign language and an AAC device to help him communicate. His optic atrophy causes difficulty with depth perception and vision that cannot be corrected with glasses due to the way his brain perceives images. Dawson has a magical ability to light up every room he walks into with his free spirit and loving personality!

BBSOAS comes with unique challenges and limitations that will affect Dawson and others for the extent of their lives.

There are only around 485 known cases in the world, and currently no cure or treatment. But there is one charity in the world trying to change that. The NR2F1 Foundation is funding research of BBSOAS in the hope to find treatment for all the other families living with the condition.

We are raising funds to support the NR2F1 Foundation, whose mission it is to empower families living with rare NR2F1 gene variants (BBSOAS) through education, advocacy, and research.

This is your opportunity to support Dawson and those individuals living with BBSOAS. 100% of the proceeds from the walk will go towards the NR2F1 Foundation.

We would like to thank everyone who donates and supports Dawson and the NR2F1 Foundation! With your support we can gain knowledge and helpful tools for Dawson and others to reach their full potential in life.

Love,

The Russelburg Family

GOLD SPONSORS

SPONSORSHIP OPPORTUNITIES
Could you help sponsor our walk and raise funds for the NR2F1 Foundation?

Gold Sponsorship - $350

Large logo printed on event t-shirt
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Silver- $250

Medium logo printed on event on t-shirt
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Bronze- $150

Small logo on t-shirt
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Click on the option on the ‘donate now’ button to select your level of sponsorship. After paying please email your logo to

frogpondfamily00@gmail.com

What is BBSOAS?

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.

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.

Dawson's Army Walk for BBSOAS

March 7 2026 10am, Locust Park NC