A new memoir · Coming soon
The Donkey and the Cart
How a Father’s Grief Became a Medical Movement
About the book
His story. Your story. Our story.
In 1990, eleven-year-old Gina Mohan complained of a tummy ache. Hours later, she was rushed to the ER with an array of terrifying, bewildering symptoms.
For the next three and a half years, her parents sought out top specialists across the nation to diagnose and treat their daughter’s mystifying and escalating medical crisis. The answer they received again and again was one no parent can easily accept: “There’s nothing we can do.”
Gina’s father refused to accept that. In his basement, with no budget and the help of many volunteers, Chuck Mohan started what became the United Mitochondrial Disease Foundation. He became a unifying force in a global effort that gave legitimacy to physicians and scientists who wanted to focus their careers on mitochondrial disease.
Blending a father’s diary, a family’s medical odyssey, and the creation of a national nonprofit, The Donkey and the Cart is a story of love and loss, family and faith, resilience and perseverance. It is proof that ordinary people can change the course of modern medicine.
Actor Jack Black, a supporter of UMDF for 25 years, appears in the story.
Why “The Donkey and the Cart”
A donkey who has harnessed himself to an empty cart… And when the cart gets too heavy, I’ll find others to help push it. Pull it. Lift it.From the Introduction, “Who Do I Think I Am?”
In 1995, after Chuck spoke to parents at a UMDF family meeting, a doctor asked him, “Who do you think you are?” This was his answer. “And dear readers, you are the ‘others.’”
United Mitochondrial Disease Foundation
About the author
From “nothing can be done” to doing something
Chuck’s involvement in mitochondrial disease began after his fifteen-year-old daughter, Gina, died from the disease in 1995. Faced with a devastating diagnosis, few answers, and the message that there was little that could be done, he helped establish UMDF in 1996. What began in his family’s home grew into an internationally recognized patient advocacy organization that brings together patients, families, physicians, researchers, and advocates.
Chuck served as UMDF’s Chairman of the Board and later as CEO and Executive Director from 2006 until his retirement in 2018. He also co-chaired the Coalition of Patient Advocacy Groups (CPAG), advocating for people and families affected by rare diseases and helping advance awareness, research, collaboration, and public policy.
Before devoting himself full-time to UMDF, Chuck was an educator, entrepreneur, restaurateur, and elected municipal official. His advocacy and community leadership have earned numerous honors, including a nomination for the Jefferson Award and recognition as Monroeville Citizen of the Year.
Pre-order today
Help pull the cart. Reserve your copy.
The Donkey and the Cart is coming soon from Amplify Publishing Group. Pre-order now and be among the first to read the story behind UMDF, thirty years in the making.
- Hardcover
- E-book
- Audiobook
Thank you. Half of all proceeds support UMDF through Gina Mohan’s Legacy Fund, helping families find the support, information, and hope the Mohans had to search for.