BBSOAS

2023 Oh What a Year
Posted by | February 12, 2024
2023 – The Year in Review for NR2F1 Foundation

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...

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Edith Coughlin
Posted by | June 13, 2023
Baking a Big Impact

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!...

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BBSOAS Center of Excellence
Posted by | May 9, 2023
Celebrating the Launch of the BBSOAS Center of Excellence

Launch Day - April 21, 2023 We are witnessing history in the making! In collaboration with a multi-disciplinary CVI team led by Dr. Veeral Shah, the NR2F1 Foundation helped make...

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Million Dollar Bike Ride
Posted by | April 11, 2023
2023 Million Dollar Bike Ride Fundraising for NR2F1 Foundation

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...

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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 on April 21, 2023. The BBSOAS Center of Excellence, led by Dr. Veeral Shah and...

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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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what a year
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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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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