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Welcome to the Jordan Avi Ogman Foundation!
The foundation was created to save our 5-year-old son’s life. After years of struggling and delayed development, Jordan was recently 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 5 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
U.S. Congressman Ted Deutch mentioning Jordan on Rare Disease Day
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
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...
Congressman Ted Deutch Speaks of Jordan at The House of Representatives
I recently met w/ the Ogman family & their 4-year-old son Jordan, who is living with TECPR2.Today, I stand w/ Jordan & 30 million other Americans living w/ rare diseases who are counting on Congress to give them hope by investing in rare disease research....
Family trying to raise $2.5M to save son battling incurable genetic disorder
Imagine a family in a race against the clock to save their son. For David and Stacey Ogman, of Boca Raton, this is their reality as their 4-year-old son, Jordan, is battling an untreatable and incurable rare genetic disorder, TECPR2, which is fatal. As of now, there...
Rep. Deutch visits 4-year-old battling rare fatal disease, promotes research funding
DEERFIELD BEACH, Fla. (CBS12) — The heart-tugging story of a 4-year-old Boca Raton boy battling a rare genetic disease and his parents’ desperate efforts to fund research to save the child’s life has now captured the attention of a local Congressman. Jordan Ogman’s...
Boca Raton family seeks cure for rare genetic disease to save 4-year-old son
BOCA RATON, Fla. -- A Boca Raton family says they’re racing against time as they work to find a cure for their 4-year-old son who was diagnosed with a rare brain disease. Last September, Jordan Ogman was diagnosed with TECPR2 and since then, his family has been...
Boca Raton family seeks cure for rare genetic disease to save 4-year-old son
By: Joanie Cox-Henry Contributing Writer Up until his first birthday, Jordan Ogman had been hitting all the typical milestones. But shortly after blowing out the candles on his first birthday cake, his parents Stacey and David Ogman felt in their hearts there was...
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
Red Meat Lover’s Presents A Meaningful “Meating” For One of Our Own
Date And Time Thu, February 20, 2020 7:00 PM – 10:00 PM EST A night of steaks, music, pinball, cigars, auction, bourbon, classic cars all for a very important and personal cause Jordan Ogman Location Museum 66 2051 High Ridge Rd Boyton Beach, FL 33426 Click Here For...
Jay Fiedler Raising Awareness
AEPi Voices: How My Son Became My Brother
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