BENEFITING: EB Research Partnership
ORGANIZER: EB Research Partnership
My name is Catie, aka Miss Corken, preschool teacher at St. Bart’s in Wayzata. I am running this years Twin Cities marathon for my darling student, Layla Nick. I had the privilege of meeting the Nick family my first year of teaching when their oldest daughter Lily was in my class. Fast forward a year and in walks Layla, a spunky 3 year old who puts a smile on my face every day. In one year, I mastered flying the red fairy across her favorite book, learned more about dragons than I ever thought possible and finally found a way to crack the classic Layla look. She is the kind of girl who in complete silence will look at me and yell, “Miss Corken, I LOVE butterflies” :) She is truly special and has a love of life that is absolutely contagious. It’s amazing what a 4 year old can teach you.
On October 6, I will be running not only for Layla, but also to support the Jackson Gabriel Silver Foundation (JGSF), a nonprofit organization founded by Alex and Jamie Silver. Their son, Jackson, like Layla, was born with Epidermolysis Bullosa, EB for short. It is a devastating, painful, disfiguring and currently incurable blistering disorder that affects children from birth. This foundation funds scientific research with the goal of curing and treating this devastating disease. While I didn’t know her at the time, Layla was born missing half the skin on her legs, feet, wrists and elbows. It was a tough journey for the Nicks, but now Layla is four and doing great!
A child who suffers from EB lacks a critical protein that binds his or her layers of skin together. Imagine your skin being as fragile as a butterfly's wings. Imagine every movement you make causing your skin to shear off your body.
Curing a rare disease is always a race against the clock, but curing EB is a race against a clock moving at warp speed. While Layla’s case is not as severe, children like Jackson have a 60% risk of dying by age 15, and nearly a 100% chance of developing an aggressive, painful and fatal form of skin cancer over the course of his shortened life.
There is tremendously encouraging work underway, and a cure for EB is within reach. To date, JGSF has raised over $1 million and has helped to fund key research projects at leading institutions including Stanford, the University of Minnesota and USC. Several human clinical trials are expected to begin this year.
In a few short weeks, I will be running for Layla and every person with EB. I am running to help find a cure! Please help me in this journey. Thank you for your support!
Lots of love, Catie
JACKSON GABRIEL SILVER FOUNDATION INC wrote -
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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.