The Donkey and the Cart

A new memoir by Charles A. Mohan Jr.
Founder & Chair Emeritus, The United Mitochondrial Disease Foundation

The Donkey and the Cart is a powerful, inspirational memoir about the agonizing loss of a child to a mysterious mitochondrial disease and the birth of a grassroots foundation that goes on to galvanize clinical research and groundbreaking therapies.

HIS STORY. YOUR STORY. OUR STORY.

The Donkey and the Cart is a powerful, inspirational memoir that tells two intertwined stories:
The agonizing loss of a child to a mysterious mitochondrial disease—and the exciting birth of a grassroots foundation that galvanized clinical research and breakthrough treatments, which now benefit the entire mitochondrial-affected world.

The story begins in 1990 when 11-year-old Gina Mohan complains of a tummy ache. Hours later, she’s rushed to the ER with an array of terrifying and bewildering symptoms. For the next three and a half years, her parents seek out top specialists across the nation to diagnose and treat their daughter’s mystifying and escalating medical crisis. Tragically, the answer they repeatedly and ultimately receive is one no parent can easily accept: “There’s nothing we can do.”

Or is there? Gina’s father disagrees. Chuck Mohan refuses to accept abject defeat and instead takes action. In his basement, he creates the United Mitochondrial Disease Foundation (UMDF). With no budget, he entices volunteers, creates educational newsletters, and fundraises through walkathons, ultimately securing hundreds of millions of dollars for dedicated research and resulting pharmaceutical developments. Today, thanks to Mr. Mohan’s 30-year fight, mitochondrial diseases are no longer mysterious and obscure. Today, mitochondrial diseases and disorders are on the global medical stage. UMDF’s work inspired similar organizations in the U.S., Canada, Australia, and beyond, and in the last year, has helped achieve historic milestones: two FDA-approved therapies for forms of mitochondrial disease.

Written over two years and now complete in manuscript form, the book blends a father’s daily diary, a family’s medical odyssey, and the creation of a national nonprofit. Actor Jack Black, a 25-year supporter of UMDF, appears in the narrative and helped connect the author with a noted writer who helped shape the manuscript.

At its heart, The Donkey and the Cart is a story of grief transformed into purpose—and proof that ordinary people can change the course of medicine.