With 2024 having come to an end, we want to take a moment to look back on all that we achieved. The NR2F1 Foundation has accomplished a great deal, especially...
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 | March 16, 2023
In collaboration with a multi-disciplinary CVI team led by Dr. Veeral Shah, a pediatric neuro-ophthalmologist, the NR2F1 Foundation helped make history with the launch of the first day of the...
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 | 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...
