On Sunday June 15, 2025, we will ride 54 (painful) miles from Clapham Common in London to Brighton Beach, to raise money for the NR2F1 Foundation.

We are cycling in support of a very special little girl, Edith Coughlin.

Edith is four years old and, until recently, lived across the road from Conor in Balham. She has a very rare genetic condition (BBSOAS), which impacts her, and her family, in many ways.

Over the last few years, we have seen Edith work incredibly hard to overcome her challenges. She trains like an Olympic athlete, in daily therapies and at home. She could often be seen at the crack of dawn tearing up and down the pavement in her walker with her tiny little leg braces learning to walk.

Edith communicates in sign, and one of her first signs was “H” which she used to communicate with her best pal, Conor’s son, Henry. Her journey so far has been one of extraordinary courage, and resilience.

Despite the daily challenges she faces, Edith is full of life; sweet, fun and loves music – always up for a kitchen disco! We feel incredibly lucky to have her and her family in our lives.

Her parents, Tim, and Jen are remarkable. Since Edith’s diagnosis, they’ve shown incredible strength, facing the unknown with determination and an unwavering commitment to giving her the best possible future. This fundraiser supports their ongoing efforts with the NR2F1 Foundation to learn more about Edith’s condition, to fund research into BBSOAS in the hope of finding a treatment.

All funds raised will go directly to the small, dedicated, charity supporting Edith and other children globally with this rare condition. Every contribution could make a real difference in these children’s lives. Thank you for helping us support this amazing little girl, and other kids like her.

Conor, Simon and Brian

BBSOAS 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, developmental delay, and intellectual disability. Children with BBSOAS may not learn to walk, talk or live independently.

There are only around 400 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.

Every penny I raise will support the NR2F1 Foundation, whose mission it is to empower families living with rare NR2F1 gene variants (BBSOAS) through education, advocacy, and research.

Learn more about the type of work the NR2F1 Foundation funds?

Watch this short video with NR2F1 Foundation President, Jennifer Coughlin and Research Chair, Melissa Thelen explain a drug repurposing project

The NR2F1 Foundation in 2024 committed to a 3-year sponsorship and awarded the funds to Dr. Schaaf, Professor and Chair of Human Genetics at Heidelberg University and Medical Director of Human Genetics at the University Hospital of Heidelberg, to hire Dr. Elsa Wassmer. Dr. Wassmer now focuses exclusively on BBSOAS and the NR2F1 gene and it is the hope that this will be first of many similar grants the foundation will award to researchers. Read more here

Our vision is that every single family and individual living with rare NR2F1 variants will live a full and empowered life.

Conor's, Simon & Brian’s London to Brighton Bike Ride for BBSOAS

By NR2F1 FOUNDATION

Conor's, Simon & Brian’s London to Brighton Bike Ride for BBSOAS

Sunday, June 15, 2025

Team Members