WHAT IS NEUROGASTROINTESTINAL & MOTILITY DISEASE
Neurogastrointestinal & Motility Disease[s] is a rare multi-system disorder characterized by progressive degeneration of the muscles of the gastrointestinal tract, causing gastrointestinal dysmotility and organ failure. It can further affect various other organs putting the body at risk for multi-system organ failure making it harder to overcome.
Our founder, Wallace Beeson, became life-threatening ill at the age of 15. What was thought of as the simple stomach flu was causing multi-system organ failure. Her stomach no longer worked, both large and small intestines lost function, her heart, kidneys, and liver were failing, and speech and motor skills were impacted. Machines and medications were the only things keeping Wallace alive and her organs working.
Wallace spent roughly one year inpatient at UNC Childrens Hospital, only to leave for short periods of time to her hometown an hour and a half away. It was here where she worked to get her speech and movement back, while also undergoing testing to get a diagnosis. Despite doctors best efforts, there was no easy answer as to why this was happening. Wallace was diagnosed with a Neurogastrointestinal disease, caused by an unknown virus mutating in her nervous system. There was no easy treatment for this either, the only options being to treat symptomatically and, later, surgery.
After spending so much time inpatient, and traveling the country to different hospitals searching for other treatment plans, it was clear a lack of research was the road block to getting answers Wallace and so many other families desperately needed. Wallace knew something had to change, no other family deserved to be told "We don't know" or "There’s nothing else we can do." The idea for the Wallace Beeson Foundation sparked, and the heart for fundraising began. Wallace held a small fundraiser in her hometown where the community came together like no other. It was called "Change for Life Change", and over $4000 was raised for UNC Children's Hospital.
In 2017, The Wallace Beeson Foundation was founded to raise money to fund research for rare Neurogastrointestinal & Motility Diseases- something that is poorly funded and lacking in resources at this time. Raising money to support local research for this rare disease and partnering in support for families affected along the way, no one should have their life threatened by a lack of research. We will not stop until a cure has been found and rare is made known.