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
I’m so touched by the story of Jordan Avi Ogman, a 4-year-old who has TECPR2, a rare, fatal neurodegenerative disease that is his family is fighting to find a cure for. Hear their story and find out how you can help: https://t.co/5XcJ2Se0fX
— Dr. Mehmet Oz (@DrOz) January 16, 2020
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
Fundraising dinner held for 4-year-old battling rare, fatal brain disease
by Chuck Weber BOCA RATON, Fla. (CBS12) — Gathering to save a little boy’s life Thursday night, a set of parents raised awareness of a rare brain disease and raised money for cutting edge research, with the hope of saving their own child’s life and others. Earlier...
Parents pin hopes on new treatment as 4-year-old battles rare, debilitating disease
BOCA RATON, Fla. (CBS12) — A Boca Raton boy is putting up the ultimate fight. With the holidays approaching, the four-year old and his family are battling a rare, debilitating and sadly, fatal disease. A CBS12 News crew met Jordan Ogman, and was struck by his smile...
Upcoming Events
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