NR2F1 Foundation

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, Ireland, in the United Kingdom. Para-athletics is the sport of athletics practiced by people with a disability as a parasport....

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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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Posted by | June 8, 2022
NR2F1 Foundation Welcomes Five New Members to the Board of Directors

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...

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NR2F1 Conference
Posted by | May 9, 2022
NR2F1 Scientific Conference for Families Was a Success!

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...

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REN
Posted by | April 8, 2022
NR2F1 Foundation is a New Member of the Rare Epilepsy Network

The NR2F1 Foundation has joined the Rare Epilepsy Network, a collaborative effort of rare epilepsies. Because over 50% of individuals with BBSOAS are also diagnosed with epilepsy, being part of...

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BBSOAS Awareness Day
Posted by | November 1, 2021
First International BBSOAS Awareness Day

The NR2F1 Foundation Global Alliance announces that the first International BBSOAS Awareness Day will be on December 7, 2021. BoschBoonstraSchaaf optic atrophy syndrome, also known as BBSOAS, is a very...

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