BENEFITING: HANNAHS HOPE FOR GIANT AXONAL NEUROPATHY INC
EVENT: Missoula Marathon 2013
Katie Watt wrote -
Published on Monday, 23 July 2012 13:58
Written by Administrator
In 2011, Levi Spencer and his younger twin brothers, Aaron and Alan were diagnosed with an extremely rare nerve disease known as Giant Axonal Neuropathy. Their parents, Jason and Charee, were faced with the devastating news that their three beautiful little boys would slowly lose all ability to move, eventually needing feeding tubes and ventilators and most likely dying before the age of twenty.
Hope – and a fighting chance for our three GAN Warriors – exists in the efforts of Matt and Lori Sames and Hannah’s Hope Fund for GAN, the non-profit organization the Sames’ started in 2008 when their daughter was diagnosed with GAN. Hannah’s Hope Fund has worked tirelessly to fund and organize research to treat GAN. Human clinical trials for a gene therapy cure that will hopefully halt the progression of the disease are scheduled to begin in 2013.
Our mission is to support Hannah’s Hope Fund in finding a cure for Giant Axonal Neuropathy. Through fundraising and awareness efforts we want to give Levi, Aaron & Alan and all other GAN children hope for their futures.
Give now. Give Hope.