The NR2F1 Foundation was founded in 2018, and Carlie Monnier, one of the co-founders, has served as its president from the beginning. Carlie earned a B.S. in Special Education and shortly after earning a M.S. in Counseling (for Higher Education students with disabilities), she and her husband had their first child, Sidelle. After 18 long months, they learned through exome sequencing that Sidelle was born with BBSOAS and it dramatically changed the course of their lives, both personally and professionally. BBSOAS is a rare neurological disorder caused by a disruption in the NR2F1 gene.
Outgoing President
Over time, Carlie learned to combine what she knows about being a professional disabilities advocate and a parent advocate. Her ability to understand and live with both perspectives has motivated the work she does for the rare disease community. Over the past 5 years, NR2F1 Foundation board members have spent countless hours, days, weeks, and months laying the groundwork while serving the global BBSOAS community through education, advocacy, and research. Carlie said she could never have dreamed how far the foundation would go simply because a determined group of parents could not accept the status quo.
Carlie said,
It has been an honor to serve as the NR2F1 Foundation President and co-founder from 2018 until 2024, combining my education, work and life experience. I am deeply proud to be a part of the NR2F1 team and what we have created to date. Although I am not going very far by stepping into the role of V.P., it will be a much-need shift because it is time for me to slowly start leaning into other aspects of my life. It is time to hand the baton over to Jen who, I believe, is the perfect person to take the NR2F1 Foundation to the next level.
Carlie isn't leaving the board of directors, she is moving into the position of vice president.
Newly Appointed President
The newly appointed President of the NR2F1 Foundation is Jennifer Coughlin, who joined the board in 2022. Since then, she has been the catalyst for some of their biggest achievements:
- Quadrupling donor engagement (and overall organization) with the implementation of a new CRM tool
- Helping to create a 5-year strategic plan and research roadmap
- Playing a key role in the foundation’s hiring of the very first postdoc to work exclusively on BBSOAS/NR2F1 research full-time (a monumental feat in fundraising and a historical moment that will propel BBSOAS research)
Jennifer lives in London, England, with her husband Tim, and their two daughters. Soon after their youngest daughter Edith was born, it became evident that things weren’t the same as they were with Alice, the oldest. When she was 2 years old, Edith was diagnosed with BBSOAS.
They found the NR2F1 Foundation’s website and discovered that the 2022 Family and Scientific Conference was being held in just 7 days. They attended the conference virtually, streaming it on their TV. Overwhelmed at finding a group that is a community and trying to make a difference, they became involved and a few months later, Tim and his best friend ran the Chicago Marathon to raise funds for the foundation. Soon after, they joined the board of directors and Jennifer left her job at UBS Investment Bank to care for Edith full-time.
Now Jennifer is stepping into the role of president, a role she does not take lightly as she takes on the responsibility of representing the community of BBSOAS patients and their families. She is in awe of Carlie and the other co-founders who had the confidence, belief, and ambition to get the foundation off the ground.
As the new president, Jen has made a promise to work tirelessly and relentlessly to help find answers for the children. She believes the only way to find those answers is by research, and fundraising to support it.
Carlie has this to say about the new President,
Jen is a dedicated and relentless advocate for our world-wide community of BBSOAS families and patients. I could not be any more confident and prouder that she is our new board president.
