With 2023 now in the past, the NR2F1 Foundation stops to pause and reflect on what has been accomplished, particularly in the field of research. The support of their friends, donors, the BBSOAS community, scientific advisors, and COMBINEDBrain partners made it all possible.
Strategic Planning Meeting of NR2F1 Board of Directors
A strategic planning meeting held at the end of January in Atlanta, GA, kicked off the new year. Seven board members and a facilitator met in person, with five other members attending virtually. Discussions centered around where the board's priorities should be focused for the next 5 years.
The result was an improved mission statement, a plan for engaging and serving the BBSOAS community, and research goals for the Scientific Advisory Board to follow. They created six committees to achieve those goals, each with a different focus.
Million Dollar Bike Ride
The Penn Medicine Orphan Disease Center hosted its annual Million Dollar Bike Ride in June, which takes place in Philadelphia, PA. They even raise money for rare disease research. The NR2F1 team, one of 39, consisted of 11 cyclists, headed by BBSOAS mom and board Secretary, Jen Nicholl. They rode 32 miles around the city on a beautiful, sunny day, raising $27,000 to fund ongoing research.
Other fundraising campaigns that took place included:
Selling homemade baked goods, networking on social media platforms to raise funds, hosting a Halloween party at a local bar, and selling tickets that included a donation to the Foundation. Other successful fundraising events included donating proceeds from yard sales and creating a fundraiser on a Twitch stream.
First Research Strategy Meeting
After the overall 5-year strategy was developed at the meeting in January, the board met in October to plan their strategy for new research. The meeting was held in Denver with the board members and strategic advisors, to talk about how best to use funds and science. They drew up a 3-year Research Roadmap.
Research Goals
The goal is to expedite an understanding of BBSOAS and, above all, discover a cure for their children and families. To reach those goals, they plan to raise $365,000 for their Year One goals. Those funds will cover:
- 3 post-doctoral researchers to work alongside their lead scientists, working exclusively on nr2f1 and BBSOAS research.
- A grant to attract junior researchers
- Develop a new BBSOAS mouse model
- Discover GGSOAS biomarkers by creating a biorepository collection
An overview of the various research programs' specifics is detailed in their blog post Research Strategy Goals.
Other achievements throughout the year included:
- Providing the funds to test two compounds for treating BBSOAS in Dr. Shah’s lab
- Funding Dr. Schaaf’s research
- Collecting samples for the biorepository
- An overhaul of the NR2F1 Foundation’s website, now available in multiple languages
- Hosting virtual support sessions for BBSOAS parents
- Continuing to grow the patient registry
- Grew their volunteer base
Upcoming Family and Scientific Conference in 2024
Now with 2023 over, preparations are being made for the next NR2F1 Family and Scientific Conference in April. The last conference two years ago was attended by 180 people from around the world. The foundation and community have grown since then so this year’s conference is expected to be larger. The cost to plan and host a conference of this size is expected to be around $35,000. Sponsors are welcomed who can donate to help offset the cost and support the BBSOAS community.
