Welcome to the Jordan Avi Ogman Foundation!

The foundation was created to save our 7 year-old son’s life. After years of struggling and delayed development, Jordan was diagnosed with TECPR2, a fatal, neurodegenerative, debilitating, genetic disease and the clock is ticking. 

Research and Development of a Cure for TECPR2 Genetic Disease

The Jordan Avi Ogman Foundation

Meet Jordan Ogman!

Saving the lives of Jordan and the other children with TECPR2 can potentially lead to breakthroughs for other neurodegenerative diseases of the brain. TECPR2 and many well-known neurodegenerative diseases of the brain—such as ALS, Parkinson’s disease, and Alzheimer’s-are suspected to share a commonality of failure, impairment, and/or abnormalities of the autophagy (the body’s way of cleaning out damaged cells in order to regenerate newer, healthier cells) process. It is excruciatingly painful to know that there is an autophagy impairment occurring in our sweet 7 year old son’s brain and central nervous system. 

JORDAN’S JOURNEY: Jordan was born in Boca Raton, Florida, on July 20, 2015.  Pregnancy was pretty blissful but we encountered difficulties hours after his birth. Despite being born at term, Jordan stayed seven nights in the NICU, clearing fluid from his lungs and showing us what a fighter he is. Aside from fighting off a few serious respiratory infections, Jordan’s first year was filled with lots of baby giggles and sheer joy as we watched him hit all milestones. 

An Interview with Jordan’s Doctor

Saving Jordan Press

Jordan’s Crossing

Jordan’s Crossing

Boca Raton’s Ogman Family Fights To Save Son From Rare Jewish Disease When a crisis strikes, everyone reacts differently. Some give up or become paralyzed. Others – like David and Stacey Ogman – jump into action. A year ago, their 4-year-old son, Jordan, was diagnosed...

A beacon of hope

A beacon of hope

Barry Byrne, M.D., Ph.D., receives “See The Light” Award from the Mathew Forbes Romer Foundation Oct. 15, 2020 — For families facing a devastating diagnosis of pediatric neurodegenerative genetic disease, Barry Byrne, M.D., Ph.D., provides a sense of hope and...

Upcoming Events

Jay Fiedler Raising Awareness

AEPi Voices: How My Son Became My Brother

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