GOAL: 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.  Jordan is a rare disease warrior who is determined, resilient, bright and just the sweetest and funniest little boy. We can’t and won’t lose him to TECPR2. 

CALL TO ACTION:  We need your help to raise $5 million dollars immediately to have researchers, complete research and pursue the plan of action for a treatment/ cure which is to develop the life-saving gene therapy for TECPR2.

THE TIMELINE: This is a true race against the clock. This is a fatal disease so the time is now to join us in saving Jordan’s life!

Make a Donation

Ways to Donate


Disclaimers: *We are special needs parents not experts, doctors or scientists trying our best to understand our son’s disease and find a treatment/ cure so we can save his precious life. This website and any related links are to share information on our family’s journey, as we see and experience our family’s journey, and not intended as medical or legal advice or as a substitute for medical advice or legal advice. No goods or services are/were provided in connection/ consideration with any donation/contribution.* *Right to Indemnification.  Each person (including here and hereinafter, the heirs, executors, administrators, or estate of such person) (1) who is or was a director or trustee of the Corporation, (2) who is or was an officer, agent or employee of the Corporation and as to whom the Corporation has agreed to grant such indemnity hereunder, or (3) who is or was serving at the request of the Corporation as its representative in the position of a director, officer, trustee, partner, agent, or employee of another corporation, partnership, joint venture, trust or other enterprise and as to whom the Corporation has agreed to grant such indemnity hereunder, shall be indemnified by the Corporation as of right to the fullest extent permitted or authorized by current or future legislation or by current or future judicial or administrative decision (but, in the case of any future legislation or decision, only to the extent that it permits the Corporation to provide broader indemnification rights than permitted prior to the legislation or decision), against all fines, liabilities, settlements, losses, damages, costs and expenses, including attorneys’ fees, asserted against him or incurred by him in his capacity as such director, officer, trustee, partner, agent, employee or representative, or arising out of his status as such director, officer, trustee, partner, agent, employee or representative.  The foregoing right of indemnification shall not be exclusive of other rights to which those seeking indemnification may be entitled.  The Corporation may maintain insurance, at its expense, to protect itself and any such person against any such fine, liability, cost or expense, including attorney’s fees, whether or not the Corporation would have the legal power to directly indemnify him against such liability.* *The Jordan Avi Ogman Foundation, Inc., is a Florida nonprofit corporation with 501(c)(3) status.* *A COPY OF THE OFFICIAL REGISTRATION AND FINANCIAL INFORMATION MAY BE OBTAINED FROM THE DIVISION OF CONSUMER SERVICES BY CALLING TOLL-FREE (800-435-7352) WITHIN THE STATE. REGISTRATION DOES NOT IMPLY ENDORSEMENT, APPROVAL, OR RECOMMENDATION BY THE STATE.” CH61119*