National Epidermolysis Bullosa Awareness Week | Annually October 25-31 | #EBweek

Debra of America EB Awareness Week 2017 Logo

National Epidermolysis Bullosa Awareness Week (Annually, October 25-31), is a time to increase awareness of Epidermolysis Bullosa (EB), to promote the need for a cure, and to spur advocacy on behalf of families suffering with the emotional, financial, and physical burden of the disease. Click here to learn about Epidermolysis Bullosa. First legislated by Ronald Reagan and the United States Congress in 1984, #EBweek is now recognized annually as October 25th through 31st. Click here to read the official resolution, H. Res. 335 from the Congressional Record.

BE PART OF THE CURE

debra of America encourages everyone to promote #EBweek by doing one or more of the following activities:

 
  1. Participate in the 2017 #TagWithElla Campaign

    Tag With EllaThis National EB Awareness Week, we are inspired by Ella Murray, a 10-year-old little girl living with Recessive Dystrophic Epidermolysis Bullosa (RDEB). In May 2017, the Washington Post featured Ella in an article that chronicled some of the challenges of living with EB. In the article, it’s said that, due to her EB, she’ll never play tag on the playground. We, at debra of America, are on a mission to give her a gift of a game of tag, just in time for the holidays.

    From October 25 through December 25, 2017, the #TagWithElla campaign takes tag off the playground and brings it online – creating an unforgettable virtual game of tag that Ella can take part in. We ask you to help bring Ella’s wish to life by recording a short video of yourself saying, “Tag, Ella! You’re It!” or taking a selfie with a #TagWithElla sign and posting it on your Twitter, Instagram, or Facebook accounts as a public post with the hashtag #TagWithElla in your caption.

  2. Share EB Brochures within your community, work, school, place of worship, community center, supermarket, etc. Download the debra of America Brochure to email to friends here.
  3. Host a work-place fundraiser! Get your colleagues involved in raising EB awareness. We’ll send you a special pack of our new #WeFightEB Awareness Bracelets to encourage donations within your office. For more information, please contact: gabrielle [at] debra [dot] org .
  4. Plan a debra of America Supporter Led Event fundraiser with friends and family. Host a pasta night, bake sale, raffle, or a community walk! Contact gabrielle [at] debra [dot] org to learn more about setting up your own event!

For more questions about any of the above activities, please call 212-868-1573 or email events [at] debra [dot] org


History OF EB WEEK

On October 11, 1984, President Ronald Reagan and the 98th Congress of the United States of America signed the Joint Resolution approving the week of November 25 through December 1, 1984, as the first-ever “National Epidermolysis Bullosa Awareness Week.” Read Proclamation 5283 - National Epidermolysis Bullosa Awareness Week, 1984 (which established the very first National Epidermolysis Bullosa Awareness Week).

On September 21, 2006 (U.S. Senate) and December 9, 2006 (House of Representatives) the 109th Congress of The United States of America declared that the last week of October annually will become “National Epidermolysis Bullosa Awareness Week”.

The bill declares that the annual dates between October 25-31: Supports the goals and ideals of National Epidermolysis Bullosa Awareness Week to raise public awareness and understanding of Epidermolysis Bullosa; Recognizes the need for a cure for the disease; and encourages the people of the United States and interested groups to support the week through appropriate ceremonies and activities to promote public awareness of Epidermolysis Bullosa and to foster understanding of the impact of the disease on patients and their families.


Donate

If you cannot participate in the ways listed above, you can still be part of the cure by donating to allow debra of America to fund research for an EB cure and provide free programs and services to those who suffer with EB.