BENEFITING: EB Research Partnership
ORGANIZER: EB Research Partnership
EVENT DATE: Nov 03, 2013
Dear Family and friends,
So yes, I am stll running....
On November 3, 2013, I will be running the 2013 NYC marathon in honor of my son Robert John Twible. I will be running with team JGSF in order to find a cure for EB. Today we are closer to a cure than ever before.
Robert continues to fight the fight everyday- he has recently graduated from Elementary School and will be heading off to Middle School in September. This year he had an amazing time in 5th grade as he was able to be a part of his school play Aladdin.(Yeah Ms. A and Ms. H !!) He loved being on stage with his friends. Robbie gets up everyday and works through the pain and blistering. Lately, walking has become more difficult for him and his mobility is limited- but he never gives up- and continues to teach us all- Through him I have learned how precious life is and how not to sweat the small stuff.
Finding a cure for this awful disease is a must. As his mommy, I refuse to sit and watch as EB takes over his body- so yes I am still running and will continue to fight to end his pain. Please join me in my efforts in finding a cure for EB- I want Robbie to live this life pain free-able to do all of the things he loves- Together we can make a difference and be closer to a cure!! To learn more about EB and JGSF visit www.jgsf.org.
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 $1.5 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!