We have some exciting news! The NR2F1 Foundation will be hosting a research development meeting next month at the University of Denver in Colorado. Scheduled to run all day Saturday,...
Posted by | July 11, 2023
June 10th, 2023, was a beautiful sunny day in Philadelphia, PA, as hundreds of cyclists rode to raise money for rare disease research. Riders had a choice of what distance...
Posted by | June 13, 2023
Written by Sarah Kirkman, Edith Coughlin’s ‘Aunty Sais’ From August 2022 - March 2023, just by baking, I managed to raise $2,582 or £2053! Can you believe it? I couldn’t!...
Posted by | April 11, 2023
On Saturday, June 10, 2023, the 10th Annual Million Dollar Bike Ride (MDBR) will take place in Philadelphia, Pennsylvania. Hosted by the Penn Medicine Orphan Disease Center to raise money...
Posted by | February 13, 2023
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...
Posted by | January 6, 2023
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...
Posted by | December 7, 2022
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...
Posted by | November 2, 2022
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....
Posted by | October 11, 2022
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...
Posted by | October 5, 2022
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...
Posted by | August 23, 2022
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...
Posted by | August 9, 2022
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...
Posted by | July 7, 2022
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...
Posted by | June 8, 2022
NR2F1 Foundation is excited to announce that we have voted in five new members to our board of directors! This will increase the number of board members from six up...
Posted by | May 9, 2022
The 2022 NR2F1 Family and Scientific Conference was held this year in Orlando, FL, on April 6 – 8. It was attended in-person and virtually by families from around the...
