BENEFITING: EB Research Partnership
ORGANIZER: EB Research Partnership
I never thought I would ever be a runner...I never thought that my heart would lead me in this direction...I am so incredibly blessed that it has...
I would like you to meet my friend and a true hero Charlie. Charlie was born with a rare skin condition called Epidermolysis Bullosa (EB) and was not expected to live very long. He was abandoned at a Wisconsin hospital, alone. Fortunately, there was a family waiting to take him home and love him. Charlie's mom Trisha refused to accept the death sentence that he had been given and she has since been his advocate, fighting each and every step of the way for him.
Charlie's EB is severe and he has spent many days in a pain that most of us could never imagine. He is wrapped head to toe in bandages to protect him from bumps that could potentially cause damage to his skin and to prevent infection that could be potentially fatal. Charlie has been faced with just about every obstacle possible and depite this, he fights...he fights with everything he has. He is a survior and each day he inspires us with his tenancity and courage...and his amaxing personality too!
This last year, Charlie has had to come back from such setbacks and he has full force. He continues to fight each day determined to beat the odds and not allow EB to win. I believe he will...for there are amazing strides being made and there is tremendous hope in the research being done. Charlie will once again be a part of history and hopefully part of the cure for EB. (Please see article http://www.startribune.com/lifestyle/health/218242151.html?page=1&c=y )
These AMAZING breakthroughs are made possible because of dedicated people who are determined to find a cure and the people who help fund this vital research. You can be part of the cure by making a donation today and supporting Team JGSF at the Twin Cities Marathon!
CHARLIE...sweet boy, this is all for you buddy! Thank you for continuing to inspire me everyday!! I love you so very much and I promise you I will continue to fight for you and others woth EB!
Click the big DONATE button or go one step further and help us fundraise by clicking the CREATE YOUR FUNDRAISER button. You'll get your own fundraising page to share with all your amazing family and friends.
The Jackson Gabriel Silver Foundation is a nonprofit organization founded with the mission to treat, cure, and end Epidermolysis Bullosa ("EB"). EB is a devastating and life-threatening skin condition that affects children from birth. Individuals with EB lack a critical protein that binds the layers of skin together. Without this protein, skin tears apart, blisters, and shears off, leading to severe pain, disfigurement and wounds that never heal.
The Jackson Gabriel Silver Foundation ("JGSF") is aggressively funding research and supporting the tremendously encouraging and viable scientific work taking place at leading institutions around the country, including Stanford, USC, and the University of Minnesota. In three short years, JGSF has raised over $1 million and has made a significant difference in the field of EB research and the pursuit of a cure.
Thank you all for your support in continuing our mission!
Click here to visit our official website.