Volunteers and Opportunities

Current Open Roles

The Foundation is staffed by volunteers. Our 9 strong board do the majority of the work, but we also need a strong team of volunteers to help us. You don’t need to be US based to work with us, we currently have team in the US and UK. At present our board is made up of BBSOAS parents, and volunteers include aunts/uncles (and great aunts!), siblings and parents. Even if you’re not related to a BBSOAS person but you have the skills and passion to help, we need you!If you are interested in any of the roles, get in touch and we can share more about the application process.

Board Member Opportunities:

Board Members need to be available to join monthly board meetings (Sundays at 1:30pm EST), and work on subcommittee projects in parallel. Ideally you would have a total of 4-6 hours a month to commit.

Fundraising-focused Board Member:

  • Previous experience in a fundraising capacity
  • No previous board experience is required, but proven fundraising success is a must to help the Foundation move forward

Volunteer Opportunities:

While the below roles are not Board Member roles, they would interact with our board members on a regular basis and be key to our success operating as a Foundation. If you are interested in future board opportunities, these also offer a nice way to get to know the role and team!

  • Social Media
  • Quickbooks Online experience
  • General admin support

If you have time to offer, we can find your work to help us with! Reach out and we would love to have a conversation.


Carlie Monnier President – Carlie.monnier@nr2f1.org


Jennifer Coughlin Vice President (President-Elect) – Jennifer.coughlin@nr2f1.org




BBSOAS Ardyns Mom, Heather (MN, USA) has been supporting us since the inception of the parent Facebook group.  She is also part of the ‘original 5’ who got together before the Foundation even existed!

“I work mostly full time in insurance, but in my free time I like doing puzzles, reading, and going for walks. I am the mom of Ardyn who is 12 years old and has BBSOAS.”



Great Aunt Cindy (NJ, USA) of BBSOAS Edith helps with maintaining our contact database.

“Iwanted to get involved and help relieve some of the admin the board members have, so they can focus on the ‘important’ stuff of finding treatment.”



Jarno at King & Spalding LLP generously provides pro-bono legal advice to the Foundation.

“I hope that the time I spend with the Foundation plays a role in increasing valuable genetic research to support BBSOAS families.”

nr2f1 team