by adminbi | Nov 2, 2020 | Press
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...
by adminbi | Oct 15, 2020 | Press
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...
by adminbi | Mar 1, 2020 | Press
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....
by adminbi | Mar 1, 2020 | Press, Uncategorized
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...
by adminbi | Mar 1, 2020 | Press
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...
