ENLIGHTEN UP, AMERICA! BE SURE TO OBSERVE “NATIONAL EPIDERMOLYSIS BULLOSA AWARENESS WEEK,” THE LAST

National Epidermolysis Bullosa Awareness Week occurs the last week of October. DebRA of America and EBMRF urge the public to communicate with their Member of the House and ask them to co-sponsor Bill H.RES.335, and vote "yes" to make this week official and promote public awareness about this devastating genetic disease!

[ClickPress, Wed Oct 11 2006] Epidermolysis Bullosa (known as “EB”) is the name of a group of genetic disorders affecting people from all walks of life – both genders and every ethnicity throughout the world. As many as 500,000 people worldwide suffer from some form of EB. Bill H.RES.335 awaits approval by Congress to sanction one special week out of the year for EB awareness.

DebRA of America and Epidermolysis Bullosa Medical Research Foundation (EBMRF) are delighted to announce that Senate resolution S.RES.180ATS for National Epidermolysis Bullosa Awareness Week was given unanimous consent on September 21, and they now await approval by Congress for Bill H.RES.335, sponsored by Rep. Timothy H. Bishop. The hard work of Senators Schumer and Clinton is greatly appreciated – now Congress must finish the job!

EB is characterized by extremely fragile skin and chronic, painful wounds caused by the slightest trauma, even day-to-day activities such as walking or eating, or from the seams in clothes. Common occurrences in severe forms of the disease may include open wounds, disfiguring scars, musculoskeletal deformities causing limited function, internal blistering, malnutrition, and deterioration of the eyes and teeth. These forms are severely disabling and life-threatening, requiring daily wound care similar to that given to acute burn patients – but unlike burns, these wounds never go away.

The impact of EB on patients and their families is immeasurable, and there is no cure for this disease. Sadly, government officials, schools, and even many of those in the healthcare field, know little about EB. EB families often find it hard to cope because of this lack of societal knowledge. In the interest of progress, the two nonprofit organizations are joining forces to accomplish this Bill’s objective.

In 1984, when President Ronald Reagan passed a temporary Bill for National EB Awareness Week, he said, “Basic research is just beginning to reveal the underlying causes of EB. New research findings and new approaches to diagnosis and treatment are needed to eliminate this affliction... I urge the people of the United States and educational, philanthropic, scientific, medical and health care organizations and professionals to observe this week with appropriate programs, ceremonies, and activities.”

In 1986, when another temporary Bill for National EB Awareness Week was passed in Congress, Reagan proclaimed, “I am confident that this concerted effort will ultimately uncover the cause and cure for this devastating disease.”

Now that the genes responsible for several subtypes of the condition are known, scientists are working harder than ever to find a cure and effective wound-healing treatments! It isn’t easy, but considerable progress is being made toward achieving these goals. In the interim, increasing public awareness is vital, and your advocacy is necessary to help those who are suffering. Knowledge is power, and education is essential to the EB community’s goals. Efforts to pass this Bill must be more concerted than ever, so please, share what you’ve learned!

The American people and interested groups are strongly encouraged to take the opportunity during the last week of October to facilitate or take part in ceremonies and activities to foster public awareness about EB, help EB families suffering hardship, and publicize the need for a cure! You might want to volunteer to help someone with EB. Donate some time to one of the hardworking nonprofit organizations. Ask wound care companies to aid those in need with free supplies, when families can’t afford to pay for them and insurance companies reject their legitimate claims, as they do in so many states. Ask a sports team to sponsor one of the charities. Befriend someone with EB. Write to NIH and ask them to increase funding dedicated to EB research. Watch for documentaries about EB on television and tell everyone to watch. If you see a news article about EB, email it to your contact list, or copy it and hand it out to people you know. Any of these actions would result in increased awareness!

Please support the goals and ideals of EB Awareness Week. The Senate has passed it, and the House Committee on Energy and Commerce, Subcommittee on Health, has H.RES.335 under review. Write, phone, email or visit – and ask your members of Congress to co-sponsor H.RES.335, to officially proclaim the last week of October, “National Epidermolysis Bullosa Awareness Week” each and every year! Please spread the word! Every co-sponsor is one more step toward proclamation!

TO ACT NOW:
Click on www.congress.org and enter your zip code. Then contact your Congressperson!

Please don’t turn away. Get involved! Take action! We whose lives have been touched by this cruel genetic disease sincerely appreciate your generous support.

Note to Editors: The full Bill can be accessed at http://thomas.loc.gov, searchword “epidermolysis”

If you would like more information on this topic, or to schedule an interview, please contact Suzanne Cohen of DebRA of America, or Andrea Pett-Joseph of EBMRF.