Carlie Monnier

BBSOAS Center of Excellence
Posted by | March 16, 2023
Launch of the First BBSOAS Center of Excellence

The NR2F1 Foundation is making history with the launch of the first BBSOAS Center of Excellence at Cincinnati Children’s Hospital on April 21, 2023. The BBSOAS Center of Excellence, led...

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nr2f1 planning meeting
Posted by | February 13, 2023
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...

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Posted by | January 6, 2023
NR2F1 Foundation Looks Back at 2022

The NR2F1 Foundation had a tremendous year of achievements in 2022, so as the year has come to a close, we look back and reflect on all that has happened during...

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BBSOAS fundraising
Posted by | December 7, 2022
NR2F1 Research Fundraising Campaign

One of the primary objectives of the NR2F1 Foundation has been the expansion of our global research network for BBSOAS research. We will provide initial funds for a project called...

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17 Mile Point
Posted by | November 2, 2022
NR2F1 Foundation Chicago Marathon Fundraising Results

On October 9, 2022, the 2022 Bank of America Chicago Marathon took place, with Tim Coughlin and his best friend Chris Schastok, running to raise funds for the NR2F1 Foundation....

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Rare Diseases
Posted by | October 11, 2022
2022 Report on Rare Disease Genetic Testing

NORD (National Organization for Rare Disorders), is a 501(c)(3) organization dedicated to individuals with rare diseases and the organizations that serve them. With over 300 patient organization members, NORD is...

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Darragh and Michael
Posted by | October 5, 2022
Irish Para-Athlete Diagnosed with BBSOAS

Darragh Andrews is a 24-year-old para-athlete who lives in Belfast, Northern Ireland in the United Kingdom. Para-athletics is the sport of athletics practiced by people with a disability as a...

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Bank of America Chicago Marathon
Posted by | August 23, 2022
Chicago Marathon Fundraiser for NR2F1 Foundation Research

Edith In March of 2020, 12 months-old Edith received the diagnosis of having BBSOAS, also known as Bosch-Boonstra-Schaaf Optic Atrophy Syndrome. It is one of the rarest neurological disorders in...

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The Coughlins
Posted by | August 9, 2022
Edith: One Family’s Story with BBSOAS

This was sent to us by Jennifer, mother of 17-month-old Edith, who was recently diagnosed with BBSOAS. Jennifer and her husband Tim also have an older daughter Alice, who is...

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grant winner
Posted by | July 7, 2022
NR2F1 Foundation Receives Matching Grant

The NR2F1 Foundation is the recent recipient of a $17,000 grant that will go towards researching the mechanisms of how BBSOAS works. The funding will be used for studies using...

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