March 2024 Newsletter
Rare Disease Week in Washington, D.C.
Dear Friends…
February 29th (and February 28th on non-leap-years) is Rare Disease Day. On this day organizations, advocates, and ordinary folks do what they can to raise awareness of rare diseases around the world. Why is this important? Because rare diseases get surprisingly little attention and few research dollars. Each rare disease affects a relatively small number of people, limiting their ability to make their voices heard. But by banding together, we can advocate better for the 300 million people around the world suffering from over 6000 identified rare diseases.
Mitchell Syndrome is one of those. Our current patient count is 30, but growing steadily. Through your support we have made significant strides in raising awareness and money for research.
We are also helped by having a powerful representative in Michele Herndon, Vice-President of The Mitchell and Friends Foundation, and mother of Patient #1. Michele traveled to Capitol Hill recently for “Rare Disease Week,” sponsored by The EveryLife Foundation for Rare Diseases. She was there in her new role with The Undiagnosed Diseases Network Foundation (UDNF). While in our nation’s capitol, Michele met with officials to request funding and support for the UDN. She also joined other members of her team to brainstorm the best ways to assist people dealing with undiagnosed illness. The Mitchell and Friends Foundation is honored to be so represented, and grateful to play a small role in this global movement.
Thank you for supporting this day, and this cause. To learn more about rare diseases, visit rarediseaseday.org.
TOGETHER, we can defeat the rarest of rare diseases.
Sincerely,
Matt and Michele Herndon with The Mitchell and Friends Foundation
Gateway to Hope
St. Louis lost its football team years ago, but we still have a BIG ARCH on the riverfront, representing what the city was back when pioneers launched their westward expansion from this convenient location.
But STL is STILL a gateway to research, innovation, and care. This past month, Graham and his mother, Susan, made their way from South Carolina to Wash U here in St. Louis to visit with Mitchell Syndrome experts. Graham is a young man coping with a recent diagnosis of Mitchell Syndrome. (And coping quite courageously, I should add.)
Graham and his mother met with Drs. Renatta Knox and Bob Bucelli, to establish care. They signed consent forms to participate in the Natural History Study, being coordinated by Wash U researcher Kelly McCoy-Gross and her team. Graham offered a skin biopsy to assist research into ASOs as a possible treatment for Mitchell Syndrome. And after enjoying some Herndon Hospitality, Graham's mother, Susan, took him to see the Gateway Arch. Maybe from up there, peering out those tiny little windows, he can see a future in which we've cured Mitchell Syndrome and kids like him can live long, healthy, and happy lives.
St. Louis has been a gateway to great things. Perhaps it still is.
