debra of America Epidermolysis Bullosa Annual Benefit

 

Saturday, November 4, 2023 | 6:30 - 10:30 PM 
Georgia Aquarium Ocean's Ballroom | Atlanta, Georgia

The debra of America Annual Benefit will be held on Saturday, November 4, 2023 at Georgia Aquarium. Join us as we celebrate the approval of the first-ever drug to treat Epidermolysis Bullosa (EB), honor those in the EB Community, and champion our ongoing mission to advance EB research and patient care. Prepare for an exciting evening featuring casino games, cocktails and hors d’oeuvres, a silent auction, and a seated dinner.

Proceeds for the Benefit will go directly towards supporting people living with EB, a painful, often fatal, and always debilitating rare genetic disease.

TICKETS    SPONSOR    DONATE

 

debra of America Benefit Photos

 

Book Your Hotel

For your convenience, debra of America has reserved a limited number of rooms at a special rate at Omni Atlanta Hotel at CNN Center, located close to Georgia Aquarium. 

Click here to reserve your room online; you can also call the hotel directly at 1-800-THE-OMNI and reference “debra of America November Room Block”. Please note that the deadline to book your room is October 13, 2023. 

Omni Atlanta Hotel at CNN Center
100 CNN Center
Atlanta, GA 30303

Mom with child

What is Epidermolysis Bullosa (EB)?

Epidermolysis Bullosa (or EB, for short) - "The Worst Disease You've Never Heard Of" - 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 EB, but there are tremendous strides being made in research. As of May 2023, the U.S. FDA approved VYJUVEK™, the first and only treatment that addresses the genetic cause of Dystrophic EB, one of four major types of EB. 

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 click here.

About 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 United States, and fund the most innovative research directed at symptom relief and a systemic cure. 

In the past five years alone, we've shipped over $4.6 million worth of wound care supplies to families in need across the country through our Wound Care Distribution Program. 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. 

Become a Sponsor

For questions or for more information about Sponsorship and Ad Opportunities, please call 212-868-1573 x102 or email events@debra.org.


Press & Media

For press & media inquiries for the 2023 Annual debra of America Benefit, please email events@debra.org.


Questions?

Please email events@debra.org or call 212-868-1573 x102.

Georgia Aquarium Photos

 

Related Resources

Infant with EB Our Mission

“Because the cost of doing nothing is too great” is an axiom that defines our mission and directs all of debra of America’s actions as an organization.

Learn More
Young Boy with EB Donate

Make a tax-deductible gift that directly impacts the thousands living with "the worst disease you've never heard of."

Learn More
Ella Video Stories

See Epidermolysis Bullosa (EB) up close and personal in the video stories of individuals impacted by EB.

Learn More