I will run a 5k to raise $5k for a cause that I am deeply connected to, the NR2F1 Foundation. Even better, guess who will be joining me?!

Thanks to The Agape Project and Ainsley's Angels, Sidelle will get to experience being in a race while riding in a state-of-the-art running chair that I'll be pushing while I run the 5k. It will be amazing to cross the finish line together!

When Sidelle was diagnosed in 2014, she was 18 months old and I spiraled into a black hole of unanswerable questions, fear and grief. Slowly over time, I met other families with whom resources were shared along with, laughter, tears and photos of our kiddos. Those families would then become the founders of the NR2F1 Foundation and we hit the ground running (pun intended!).

YOU, our supporters are the main reason we are still driving research BUT there is still so much we don't know and we need to keep funding research for treatments that our community deserves.

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

Each step that hits the pavement is in honor of Sidelle and her BBSOAStrong community around the world.

I'll do the 5k running part, please do your part and help me get to $5k!

Thank you for your support.

Love, Carlie

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.

Carlie Monnier - Growler Gallup, 5K

By NR2F1 FOUNDATION

Carlie Monnier - Growler Gallup, 5K

September 28, 2025 - Growler Gallup, Detroit MI