Meet Zeb! An exclusive interview

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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

Meet Zeb from the Netherlands, a young man who lives with a very rare NR2F1 disease caused by a NR2F1 gene variant, Bosch-Boonstra-Schaaf optic atrophy syndrome, or BBSOAS.  This is the first-ever interview of someone living with BBSOAS and he and his mom Mandy talk with Carlie Monnier, President of the NR2F1 Foundation.

He discusses everything from life with a rare syndrome to school, his interests and hobbies, goals, and at the end of the interview his father has a surprise for him. Don’t miss this historic interview.

Click on the image to watch the interview.

President of Board of Directors at NR2F1 Foundation | Website

Carlie is the President of the Board of Directors for the NR2F1 Foundation, a registered 501(c)(3) non-profit organization dedicated to those living with rare mutations on the Nr2f1 gene.

With a B.S. in Special Education and a M.S. in Counseling, Carlie has worked at EPU Children’s Center as a Resource Specialist serving parents of children living with disabilities and then directed a parent leadership group for disability advocacy through storytelling and public speaking.

Carlie lives with her husband Jeff and their two daughters, one of whom has the rare Nr2f1 gene mutation, in Royal Oak, Michigan. She wants all Nr2f1 families whose lives have changed dramatically to know they are not alone.

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