BENEFITING: The Champ Foundation
EVENT DATE: Apr 23, 2016
Pearson Syndrome (PS) is a multi-system disease caused by a deletion in mitochondrial DNA. The hallmark features are sideroblastic anemia and pancreatic insufficiency. PS is often fatal in infancy. In addition to the hematological and pancreatic symptoms, PS can impair the heart, kidneys, eyes, ears and brain. Survivors develop Kearns-Sayre Syndrome.
Since its discovery in 1979 by Howard Pearson, there have only been around 100 cases reported in the medical literature. PS is probably under-diagnosed, since few doctors are aware of the disease’s existence, much less its symptoms.
At just a few months old, William, The Champ, was diagnosed with Pearson Syndrome. William is incredibly sweet, smiley, curious and precious. We love watching Elizabeth & Jeff with William, he tracks Elizabeth wherever she moves and his face lights up at Jeff's goofy noises. They are selfless and loving parents who deserve all of the support in the world. Please consider learning more about Pearson Syndrome and The Champ Foundation. This organization has given their first grant for research toward a cure for PS and your efforts will continue to expand their efforts. They do a wonderful job with William's blog and send a newsletters to keep their donators informed.
I can't wait to run the Tar Heel 10 Miler in Chapel Hill on April 23rd 2016 and hope you can donate and/or join us for the race! Use this link to save $5 when you sign-up and the team will donate $5 back to The Champ Foundation for each teammate. Select the social group called "The Champ Foundation" when registering.