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...