Organizations Filed Purposes:
DEBRA IS DEDICATED TO FINDING A CURE FOR EBIDERMOLYSIS BULLOSA " EB" WHICH EFFECTS 1 OUT OF EVERY 50,000 LIVE BIRTHS IN THE UNITED STATES TODAY. EB IS A GENETICALLY BASED DISEASE CHARACTERIZED BY CHRONIC, PAINFULL BLISTERING. THE SKIN AND MUCOUS MEMBRANES ARE SO FRAGILE THAT THE SLIGHTEST TOUCH CAN CAUSE SEVERE BLISTERING INSIDE AND OUTSIDE THE BODY. PRESENT AT BIRTH, EB EFFECTS MEN AND WOMEN OF ALL RACES AND ETHNIC GROUPS, AND SOMETIMES, WHEN THERE IS NO FAMILY HISTORY. IT OCCURS AS THE RESULT OF A SPONTANEOUS GENTIC MUTATION. TODAY, THERE IS NO CURE OR TREATMENT FOR EB, EXCEPT DAILY WOUND CARE AND BANDAGING.GENETIC RESEARCH IS MAKING PROGRESS TOWARDS TREATMENTS AND A CURE.
DEBRA IS DEDICATED TO FINDING A CURE FOR EB THRU RESEARCH EB AFFECTS 1 OUT OF EVERY 50,000 LIVE BIRTHS IN THE U.S.
PUBLIC AND PROFESSIONAL EDUCATION - EDUCATE THE PUBLIC & HEALTH PROFESSIONALS ABOUT DYSTROPHIC EPIDERMOLYSIS BULLOSA "EB"
PATIENT & FAMILY SERVICES - PROVIDE SERVICES FOR THE PEOPLE WITH EB AND THEIR FAMILIES THROUGH NEWSLETTERS, COUNSELING, PEER SUPPORT SERVICES, CONFERENCES AND SEMINARS
ADVOCACY - NETWORK WITH OTHER PROFESSIONAL ORGANIZATIONS AND MEET KEY LEGISLATORS TO INFORM THEM OF EB AND SECURE RESEARCH FUNDS
Executives Listed on Filing
Total Salary includes financial earnings, benefits, and all related organization earnings listed on tax filing
| Name | Title | Hours Per Week | Total Salary |
|---|
| Thomas Trimarchi | DIRECTOR | 1 | $0 |
| Angela Christiano Phd | DIRECTOR | 1 | $0 |
| Joui Uitto Md Phd | DIRECTOR | 1 | $0 |
| Leslie Rader | DIRECTOR | 1 | $0 |
| James Wetrich | DIRECTOR | 1 | $0 |
| William Cornman | DIRECTOR | 1 | $0 |
| John Lee | SECRETARY | 1 | $0 |
| Robert Ryan Ph D | DIRECTOR | 1 | $0 |
| Richard Gallagher | CHAIR EMERITUS | 1 | $0 |
| Andrew Tavani | CHAIR | 1 | $0 |
| J Alec Alexander | TREASURER | 1 | $0 |
| Brett Kopelan | EXECUTIVE DIRECTOR | 40 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202120869349300312_public.xml