FLORIDA — (VINnews) Stacey and David Ogman have not gotten much sleep since their 4 year old son, Jordan Ogman, was diagnosed in September with TECPR2, a fatal, neurodegenerative, debilitating, Jewish genetic disease. And the urgency to find a cure rapidly ticks on since none of theTECPR2 patients studied in Israel survived past childhood with the first dying at approximately age 5.
The Boca Raton-based family has now launched The Jordan Avi Ogman Foundation to to raise awareness and funds for a treatment and cure for TECPR2. Their goal is to raise $2.5 million dollars immediately to have Physician Scientist, Dr. Byrne, Director of the University of Florida’s Powell Gene Therapy Center, complete his research and pursue the plan of action for a cure.
This research would not only save Jordan’s life but it would benefit other children with TECPR2, as well as lead to lifesaving 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—all share a common core of failure, impairment, and abnormalities of the autophagy process.
“Jordan rises to the occasion, time and time again, fighting every second of every day, for his ability to swallow, walk without falling, and articulate his thoughts and needs with his extremely limited ability to speak,” said his mother, Stacey Ogman, who fights for the well-being of hundreds of other children as a State Attorney on behalf of abused, abandoned, and neglected children. “TECPR2 has already robbed Jordan of so much, including cognitive deficits and his ability to maintain balance and coordinate movements, both physical and verbal, leading to falling multiple times an hour and frustration due to speech delay. Despite the daily challenges Jordan faces from TECPR2, his smile and laugh continue to light up any room he enters. He is a warrior and he is resilient and we are going to win this battle.” Jordan’s father, David, a Wealth Advisor at Merrill Lynch, is often asked by others regarding his passion for saving Jordan, “How do you do it?”, in which David responds “How do you not?” He is also told “ You’re a real hero”, in which David responds, “I’m not the hero, Jordan is!”
To set up an interview with Stacey Ogman and/or David Ogman, please contact:
David Ogman at (561) 945-5040 mobile, Stacey Ogman at (561) 927-7090 mobile, or email at [email protected]
For more info and/or to donate: https://thechesedfund.com/jordanaviogmanfoundation/jordan-avi-ogman-foundation