Jana K. Sheets, May 26, 1974 – January 6, 2010

“At the time we thought it was just a bone disease. My doctor told me there were no treatments, but that he hoped when I stopped growing the cysts would stop growing.”

Marcus Veng Petersen, September 10, 1996 – September 6, 2004

“Though he is gone, he will always be a part of what we do in continuing the efforts to share our stories and to try to help others searching for information and finding doctors.”

Robin Brown, December 28, 1981 – February 7, 2007

“Robin was surrounded by people that loved and cared for her. She always found a way to brighten up a room and make us laugh . . .”

Brittany Danielle Burford, July 29, 1990 – September 26, 2009

“She loved books and animals … the beach … She wanted someday to be a mother to a red-haired boy … She taught us about faith by being faithful; to be generous by giving; to love by sharing her heart.”

Scott Allen Inman, February 14, 1971 – January 16, 2009

“I often wonder how different our lives would have been had he not had this horrible disease, but that is something I will never know . . .”