I am a proud Ambassador for the EB Research Foundation, Australia, a not-for-profit charity that I am passionate about.
On November 3rd, I will be running the 2019 TCS New York City Marathon for the EB Research Foundation alongside Team EBRP, our US based partners from EB Research Partnership.
Together, these dynamic organisations fund scientific research with the goal of treating and curing Epidermolysis Bullosa (EB).
EB is a devastating and life-threatening skin disease that affects children from birth. For a child with EB, even the slightest touch can cause blisters and wounds all over their body - inside and out. You can catch a glimpse into life with EB and some of the amazing work being done to find a cure here .
And check out this great video why people love to run with Team EBRP.
There is around 1000 sufferers in Australia and 500,000 worldwide. Curing a rare disease is always a race against the clock. But curing EB is a race against a clock moving at warp speed. Children with severe forms of EB 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 or her shortened life.
There's encouraging work underway, and a cure for EB is within reach. The EB Research Foundation and the EB Research Partnership is aggressively funding research.
In 2018, $5.6 million was raised to fund 19 projects across the globe in 6 different countries. The projects they supported, span all types of EB and utilize a wide-range of innovative approaches from wound care to gene-editing to spray-on skin, all with the possibility to deliver a meaningful treatment or cure for EB.
Visit www.ebresearch.org to learn more on Research.
I am honored to be running for my charity the EB Research Foundation with Team EBRP in the 2019 NYC Marathon.
Please support me and EB Research by clicking on Browny4EB or visiting: https://www.gofundme.com/f/Browny-4-EB
Every dollar donated brings us a step closer to finding a cure for this devastating disease.
On behalf of the EB Research Foundation, thanks for your support.
#healEB #Browny4EB #JB4EB #EBRF #nova100 #chrissiesamandbrowny #thanksunderworks
- Ella Whiffin & Amy Coles .
- Erin Boyle
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