Matt and Josh Harder, 47 and 42, have Leigh's Syndrome, a mitochondrial disease. Diagnosis confirmed by Dr. Anna Szekely with DNA findings in 2006. Active in a series of clinical trials at Children's Hospital of Philadelphia with Dr. Marni Falk & Dr. Zarazuela Zolkipli-Cunningham (Reata RTA408), Dr. Falk & Dr. Amy Goldstein (Stealth SPIMM301) and Glycemic Studies with Dr. Shana McCormack. On October 5, 2018 both brothers began participating in the three year Phase 3 open label extension study of Stealth Biotherapeutics’ Elamipretide. They have completed the placebo controlled phase of that study. Dr. Zarazuela has prescribed a Mito Cocktail in liquid form through the CHOP Mito Clinic for both our Mito Men- CT Medicaid does not cover the medicine. It is $270 per month for each ($540) but Dr. Z is considering adding another compound called Glutathione which may increase the cost dramatically. Dr. Dhasakumar Navaratnam, our Yale Neurology physician, says "the Mitochondrial Cocktail is an important part of both of you staying as healthy as possible." Dr. Navaratnam expects gene editing to be available to Matt and Josh in 5 to 10 years and hopes that this technology may correct their genetic defects. In the meantime Dr. Navaratnam wants Matt and Josh to continue clinical trials and take the study drugs whenever they can. Dr. Kumar and all the doctors at Mitochondrial Medicine Center at CHOP say both men should do the cocktail. Contributing to this fund will help make this medically necessary compound available to our Mighty Mito Men — please help.
Colin & Lisa Kelleher
Fundraising team: Mito Brothers Matt & Josh Team (2)