BENEFITING: EB Research Partnership
ORGANIZER: EB Research Partnership
Why am I running?
I am running for my daughter Layla. She was born on January 20, 2009 missing half the skin on her legs and feet, her wrists and her elbows. Hours after her birth we heard the words Epidermolysis Bullosa and our world has never been the same. Layla spent the first year of her life with her entire body wrapped in bandages, being carried around on a pillow and enduring 2 to 3 hour daily and painful dressing changes. She is now 4 and thriving. But sadly, we are the lucky ones. Layla has taught me more about life, about myself and about GOD than I could have ever imaged. She has taught me what it means to be strong, to be brave and to continue on no matter what pain there may be - everything I will need to get through training for a marathon.
I am running for Jameson - a beautiful butterfly angel I never got to meet here on Earth because EB took his life way at 7.5 months of age. Even though I never met Jameson, I could not love him more. His life impacted so many and without him, I would have never met the Setsma family and his amazing mother, Melisa. Not a day goes by that I do not think of her. Even though I see her once a year (if I am lucky) I feel like she is right next to me. She has also taught me what it means to be strong, to be brave and to continue on no matter what pain there may be - everything I will need to get through running a marathon. An added bonus is I get to run with Jameson's daddy Todd!! So blessed to hopefully cross the finish line with him!
I am running for every baby, child, adult who has every type of EB! I am running for a CURE! I am running so that everyone born with EB can LIVE a LIFE, not just SURVIVE it. I am running so that everyone born with EB will no longer experience PAIN. I am running so that there are NO MORE FUNERALS because of EB!!!!!
I will be running with Layla and Jameson's names on my number, your support at my back and Todd and GOD by my side. THANK YOU!!!!
HERE IS MORE INFO ON JGSF!
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! Your donation is 100% tax deductible
Click here to visit our official website.