Run, walk and move as much as you would like to help debra of America reach our nationwide goal of $30,000 to close out 2021 – all while helping support those living with Epidermolysis Bullosa (EB).
This is a great way to get back in shape and raise funds in the name of EB. Prizes will be awarded to those who raise over $1,000 as an individual. The $35 Registration fee includes a debra holiday hat. Let’s band together (virtually) and help find a cure for EB.
The money raised for this event will go to support research, provide medical supplies to families and patient access to specialists. Many patients with EB travel out of state for care and support, and many insurances do not cover the supplies needed for these patients' care. debra of America is the only national nonprofit organization dedicated to funding research and providing supportive services and programs for those with EB.
What is EB?
Epidermolysis Bullosa, or EB, is a rare connective tissue disorder with many genetic and symptomatic variations. All types of EB share the major symptom of extremely fragile skin that blisters and tears from the slightest friction or trauma. Internal organs and bodily systems can also be seriously affected by the disease. EB is always painful, often pervasive and debilitating, and is in some cases lethal before the age of 30. There is currently no cure or treatment for EB. Pain management, wound care, and preventative bandaging are the only options available.
There are about 25,000 people living with EB in the US. It occurs in every racial and ethnic group and affects both genders equally. For a more in-depth and comprehensive understanding of EB, please also check out debra of America’s explanation by clicking here.
What is debra of America?
Because the cost of doing nothing is too great. This axiom defines debra of America's mission and directs all that we do. We are dedicated to improving the quality of life for those living with EB. To achieve our mission, we do two things in parallel: we provide free programs and services to the EB Community in the US, and fund the most innovative research directed at symptom relief and a systemic cure.
In 2019 alone, our largest program, the Wound Care Distribution Program, sent over $1 Million worth of specialized bandages. That translates to over 108,000 pieces of wound care sent to families across the US. Our research funding identified the genetic basis of EB and supports the science, which is at the forefront of gene and stem cell therapy, RNA repair, protein replacement, and inhibition of squamous cell carcinoma.
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© Copyright 2020, debra of America, All Rights Reserved | The Dystrophic Epidermolysis Bullosa Research Association of America, d/b/a debra of America is a registered 501(c)(3) tax exempt organization. | All Trademarks and Brands are Property of Their Respective Owners. debra of America does not endorse any drugs, tests, or treatments that we may report. This website is for informational purposes, always check with your physician before adopting any medical treatment. | EIN: 11-2519726
On behalf of debra of America, thank you for your generous support!
A copy of your receipt will be emailed to you.
Please visit http://doublethedonation.com/debra to check if your employer has a Matching Gift Program. Matching gifts may double or even triple your contribution’s impact.