BBSOAS

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...

Continue Reading
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...

Continue Reading
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...

Continue Reading
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...

Continue Reading
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...

Continue Reading
at the top it says BBSOAS Grandparent Support Group. in the middle are 3 images of grandparents with their BBSOAS grandchild. under the pictures it says Talk with other BBSOAS grandparents to share ideas, resources and support. Contact Donna at d o r l i n e r at c o m c a s t dot n e t
Text says Meet Zeb. Zeb is diagnosed with BBSOAS. Watch the exclusive and first time interview with Carlie President of the NR2F1 Foundation. in the middle is an up close picture of Zeb a young man, wearing a pink t-shirt and holding a mug in his hand and smiling at the viewer
Posted by | November 18, 2021
Meet Zeb! An exclusive interview

Click the image to watch the video.   Meet Zeb from the Netherlands, a young man who lives with a very rare NR2F1 disease caused by a NR2F1 gene variant,...

Continue Reading
Image contains 5 graphics depicting 5 countries including France, the U.K., the U.S.A, Germany and the Netherlands. in the center is a graphic of 5 hands reaching towards each other touching fingers in a circle
Posted by | November 18, 2021
2021 BBSOAS Research Update

October marked the first BBSOAS collaborative research meeting with Michele Studer (France), Patrick Yu Wai Man (England), Danielle Bosch and Ninke Boonstra (Netherlands), Veeral Shah, Jane Edmond, Nilesh Desai, Sophia...

Continue Reading
wording states NR2F1 Foundation Store Grand Opening with an image of a couple wearing matching BBSOAS grey sweatshirts and a girl wearing a blue BBSOAS t-shirt and a woman wearing a trucker hat that says Be Cool Be Kind alongside the DNA logo of the NR2F1 Foundation logo