NR2F1 Foundation Strategic Planning Meeting

No non-profit organization has ever said “we have too much time and too much money”!

The need for a strategic plan

“Let’s be honest, as a small nonprofit, we are more limited by our resources and time than our opportunities to create impact. This is why we have developed a strategic plan in order to increasingly deliver impact in a way that is sustainable”, said Carlie Monnier, President of the Board of Directors.

NR2F1 Board Strategic Planning MeetingThe process

On January 28-29, 2023, the board of directors of the NR2F1 Foundation met in Atlanta, GA, for their very first strategic planning meeting. It was attended by 7 board members in person, and 5 members virtually, along with their facilitator, Christina SanInocencio, PhD, CPH, CNP. They sat around a table together for 13 hours working towards building a strategic plan, discussing the foundation’s vision, mission, values, and strategy.

The planning process began several months ago and has been a highly collaborative process between all board members, including the facilitator. For example, a community needs survey was sent out to learn what BBSOAS families needed, as well as an internal survey for the board members to reflect on the strengths and weaknesses of the foundation.

One goal was to create a plan that will help the foundation focus on key priorities and enable the board to make decisions over the next few (1-3) years, while also adapting to new conditions and opportunities as they arise.

The discussions

Discussions centered around questions such as (

  • For what impact, and for whom, do we want to hold ourselves accountable? Are there specific populations on which we want to focus, or disparities that we want to address?
  • How will we achieve that impact, based on what we as an organization are best positioned to do?
  • What specific priorities and work will we focus on?
  • What resources – financial, human, and organizational – will we need to pursue this work?
  • How will we know we are making progress?

Jennifer Coughlin said, “When we sat around the meeting table on Saturday we managed to quickly get into really good, meaningful discussion, and respectively challenged each other to ensure the best outcome for our community we serve.”

The weekend was intense for everyone but extremely productive. Carlie said, “We are thrilled to be moving to this next phase of growth for the NR2F1 Foundation to better serve our community!”nr2f1 board members

What was accomplished

Using SWOT analysis and Impact vs. Effort, the following was accomplished:

  • Created a blueprint to include more structure in the day-to-day operations of the board with clearer systems of communication and organization
  • Tweaked our mission statement to replace ‘awareness’ with ‘advocacy’ which we feel more strongly reflects the work that we do. Based on that, we formalized the 3 pillars of our foundation; education, advocacy and research.
  • We then built our strategy of how to serve the BBSOAS community based on those 3 pillars:

Education– continue to grow a central repository for information and provide understandable and accessible resources.

Advocacy – engage and support families and individuals living with BBSOAS and represent the BBSOAS community to external parties.

Research – includes the patient registry, partnerships/collaborations and strategy for the Scientific Advisory Board

  • We also took a look at capacity building, prioritized the areas of most need and created actionable items.
  • We developed 6 committees or workstreams for the year to help us focus.  The key ones are fundraising, family engagement, 2024 conference planning and communication for the respective committees to be completed in year one.

Both a 3-year and a 5-year plan were carved out, with the rough drafts expected by March 15th, and the final drafts by March 30th.

Board feedback

Carlie Monnier said, “The weekend was a reminder of how far we have come as a foundation and how much further we intend to go. I am bursting with pride for our team and the dedication they have to serving the BBSOAS community.”

The future of the NR2F1 Foundation and the BBSOAS community it serves is looking bright!


Katia Roda, Patient Registry Chair and one of the board members in attendance, had this to say. “I had the opportunity to attend NR2F1 Foundation’s first Strategic Planning Meeting. It was such an incredible experience to work together as a group for a goal that’s so near and dear to our hearts.  Throwing around ideas that not only question but strengthen our purpose and the overall mission of this organization was incredible to witness.  There was so much love and passion in the room.  Even when our opinions differed, it didn’t matter, because we all knew we were there for the same purpose.  I am so honored to sit alongside this group of dedicated parents and excited to provide programs and support that benefit our BBSOAS community.”

Jennifer Coughlin flew all the way from the UK to attend the meeting. She said, “Leaving for the weekend felt difficult, it was the first time I’ve left both my daughters and flown to another country!  In full disclosure I’d forgotten just how long a flight from London to Atlanta was – but being child free I did take full advantage of being able to read a whole book on the way!
Having only joined the board in September, this was my first chance to meet my fellow board members in person. I’ve only met one other BBSOAS parent, so this was insightful, and admittedly eye opening/scary to hear about what the future may hold in store for us as parents.

Overall, I was so grateful to meet this team of committed parents who want to not only help their own children, but as board members, help the entire BBSOAS community now and in the future. We will be looking to engage members of the BBSOAS community to help support us as we know we can’t do it all alone.”

President of Board of Directors at NR2F1 Foundation | Website

Carlie is the President of the Board of Directors for the NR2F1 Foundation, a registered 501(c)(3) non-profit organization dedicated to those living with rare mutations on the Nr2f1 gene.

With a B.S. in Special Education and a M.S. in Counseling, Carlie has worked at EPU Children’s Center as a Resource Specialist serving parents of children living with disabilities and then directed a parent leadership group for disability advocacy through storytelling and public speaking.

Carlie lives with her husband Jeff and their two daughters, one of whom has the rare Nr2f1 gene mutation, in Royal Oak, Michigan. She wants all Nr2f1 families whose lives have changed dramatically to know they are not alone.

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