The foundation was created to save our 4-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.
The goal of the Jordan Avi Ogman Foundation is to raise awareness and funds for a treatment and cure for TECPR2, a rare, fatal disease that has claimed the lives of every child ever studied with TECPR2 during their childhood years. We will not allow this to be Jordan’s fate. He is a warrior who is determined, resilient, bright, sweet, and funny. This little boy is the heart and soul of our family.
We need your help to raise $2.5 million dollars to have the University of Florida's Powell Gene Therapy Center, complete his research and pursue the plan of action for a cure.
This is an immediate call to action as we are in a true race against the clock. This is a fatal disease, and none of the TECPR2 patients studied in Israel survived past childhood with the first dying at approximately age 5. Jordan is nearly 4 ½, so the time is NOW to join us in saving his life.
We encourage you to keep checking the website for updates and more information.
Thank you for taking the time to learn about Jordan’s journey and TECPR2.
Love,
Stacey, David, Kira & Jordan Ogman
