State Lawmaker leads passage of a House Resolution commending debra of America for its service to the rare disease community
RICHMOND, VA (February 17, 2016) -- Today, Brett Kopelan, Executive Director of debra of America, issued the following statement upon unanimous passage of an Epidermolysis Bullosa (EB) Awareness House Resolution (House Resolution No. 127) introduced by Delegate Chris Peace of the Virginia General Assembly.
"We thank Delegate Peace and the other co-patrons for leading this important effort of promoting EB awareness in the Commonwealth of Virginia. His work to draw attention to Virginians about EB's dire effects upon those living with and caring for all Virginians impacted by EB in the Commonwealth are to be commended. This Resolution is a positive step for raising needed awareness towards the development of a cure or treatment to overcome this devastating disease. debra of America is honored to receive the House of Delegate’s recognition as a leader in the fight to cure the worst disease you’ve never heard of."
Virginia House of Delegates, Christopher K. Peace issued the following statement:
“I am delighted to offer this resolution commending debra of America for their efforts to increase awareness of and support to individuals with Epidermolysis Bullosa, a rare, genetic connective tissue disorder characterized by extremely fragile skin. As the father of a son with EB, I applaud debra of America for providing much needed support of our children and their parents.”
House Resolution No. 127 calls attention to the history of debra of America’s work to support families impacted by EB through funding research and providing services. It also draws attention to burdens associated with this rare disease that impacts approximately 25,000 Americans and one in every 20,000 children born in the United States. A copy of House Resolution can be found here.
About debra of America: Founded in 1980, debra of America is a non-profit organization which provides comprehensive support to those with Epidermolysis Bullosa. It is the only national organization in the United States to offer free Programs and Services to affected individuals and their caregivers and fund research for an EB cure and treatment. EB is a rare, genetic connective tissue disorder characterized by extremely fragile skin and the development of recurrent, painful blisters, open sores, disfiguring scars, disabling musculoskeletal deformities, internal complications, and shortened life-span. Research indicates that one in every 20,000 children in the U.S. are born with the disease. There is currently no known EB cure or treatment. For more information, visit: debra.org
About the Virginia General Assembly: The Virginia General Assembly is the oldest, continuous law-making body in the New World. According to its website, it dates from the establishment of the House of Burgesses at Jamestown in 1619. It is a legislative body comprised of elected representatives who serve in a part-time capacity in the House of Delegates and State Senate. Delegate Christopher "Chris" Peace has served as a Delegate from the 97th House District since 2006 representing Kent County and parts of Hanover and King William's Counties in Virginia.
Social Media: Facebook/Twitter: @debraofamerica, Hashtag: #EBawareness
FOR MEDIA COVERAGE: Casey Fitzpatrick, Events & Communications Director: 212-868-1573 x105, casey@debra.org