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Due to the ongoing Covid-19 pandemic, the 3rd Annual San Antonio Butterfly 5K on Saturday, October 30, 2021 is now virtual only, which means that you can get involved from wherever you are!
Whitney Ramsey and her best friend, Angie Songster, started this Supporter Led Event in 2019 in honor of Whitney’s daughter, Julianne, who lives with Epidermolysis Bullosa (EB). They share, "One of the reasons we love working with debra of America is that they believe, like we do, in meeting the needs of people right now. That’s what you get to be a part of when you register for this race!”
This year’s event falls on EB Awareness Week, so celebrate with supporters from across the country by taking a walk around your neighborhood, a mile on the treadmill, or even run a 5K at your local park!
If you are interested in sponsorship opportunities or to volunteer, please email Whitney Ramsey at wbr1980@gmail.com.
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 2017 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.
Progress
Leaderboard
Contact Us
Email us at jason@debra.org or call (212) 868-1573 x 102.
View our website to learn more about debra of America and EB.
On behalf of debra of America, thank you for your generous donation!
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.