VP Michele Herndon Pursuing New Opportunities with Old Friends at the UDNF

Dear Friends…

The Undiagnosed Diseases Network (UDN) is a nationwide group of scientists and doctors that use research, data sharing, genome sequencing, and collaboration to diagnose individuals with rare and mysterious illnesses. The UDN was the organization that first identified ACOX1 gain-of-function (otherwise known as Mitchell Syndrome) following Mitchell Herndon’s visit to the UDN site at Baylor College of Medicine, in the summer of 2017.

Since then, Michele Herndon—Mitchell’s mother and the Vice-President of the M&FF—has volunteered with the UDN as a parent-advocate. Grateful for the organization’s help in diagnosing her now-deceased son, Michele has visited with parents in the UDN system and helped them navigate their own difficult and unexpected journeys.

This summer, Michele’s work with the UDN became official. Originally started in 2008 as a federal program funded through the NIH, the UDN is being transitioned into a non-profit known as the Undiagnosed Diseases Network Foundation. With a $2.5 million grant from the Chan Zuckerberg Initiative (yes, that Zuckerberg), the UDNF is launching a nationwide Patient Navigator Program to assist thousands of applicants around the country, in pursuit of a diagnosis. Given her personal experience with rare diseases, many years in administrative nursing, and overall skills and experience, the UDNF Board has identified Michele as the perfect person to lead the effort.

While it was hard to leave St. Louis Children’s Hospital after over 20 years of service, and while she is exceedingly grateful for the staff and doctors at SLCH who worked so hard to improve and save the life of her son Mitchell, Michele is honored by this new opportunity, and determined to succeed.

What does this mean for The Mitchell and Friends Foundation? We are still a small non-profit foundation working hard to increase awareness of Mitchell Syndrome, support Mitchell Syndrome patients and families, and raise money for research into cures and treatments. Michele is committed to working with her husband, Matt (that’s me), and the M&FF Board to advance the cause. But having Michele at the epicenter of rare disease work will only help increase the visibility of Mitchell Syndrome as a possible diagnosis for children with mysterious neurological problems. And Michele will be meeting lots of people and having lots of experiences that will be useful for our small but growing Foundation.

Thank you for your support of the ongoing work. As we approach the end of our current fundraising goal, the M&FF Board will be considering new goals and strategies as we seek to find a cure for this, the rarest of rare diseases. Expect an update soon.

Sincerely,

Matt and Michele Herndon with The Mitchell and Friends Foundation