It's the first official EB Awareness week and EB Patients need your help! We had over 4000 people that signed our petition for the Wound Care Bill, now we need your help in writing to legislators and find sponsors for this Bill.
The Wound Care Bill is vital and extremely important to EB families nationwide. It is medically necessary for people with many forms of Epidermolysis Bullosa to bandage wounds and protect healthy skin from harm. Most of the time, these expenditures are not covered by insurance of any kind, and the outlay for one household can range up to 5,000 a month just for wound care supplies! Every American should be able to participate in impartial health care coverage, regardless of their disease. The public and our legislators must understand the impact of this disease on EB patients and their families, and the inequity that subsists in today's health care system. The Wound Care Bill mandates insurance companies to provide coverage on all bandage and wound related products needed by those that suffer from Epidermolysis Bullosa.
Write your Representative and your Senators, urging them to sponsor the bill!
You may find your representative here:
http://www.house.gov/writerep/
You may find your senator here:
http://www.senate.gov/general/contact_information/senators_cfm.cfm
You may find your governor here:
http://www.usa.gov/Contact/Governors.shtml
You may use the SAMPLE LETTER available HERE:
http://ebanusa.org/sponsor_letter.doc
And here's a copy of the WOUND CARE BILL you may send along with it:
http://ebanusa.org/Wound%20Care%20Bill.doc
If you are living in the following States, we have SPECIAL instructions for you! Please write us back and let us know which of these states you live in so we can give you the name of the Representative or Senator that has helped the EB community before and knows how devastating EB is!
States: California, Colorado, Connecticut, Florida, Georgia, Illinois, Massachusetts, Maryland, Michigan, Minnesota, Missouri, Mississippi, North Carolina, North Dakota, New Hampshire, New Jersey, Nevada, New York, Ohio, Pennsylvania, Rhode Island, South Dakota, Texas, Utah, Virginia, Washington, Wisconsin, West Virginia.
Other ways you can help?
1. Ask your friends and family to sign the Petition in support of the Wound Care Bill and to help spread the word.
http://www.gopetition.com/sign.php?currentregion=238&petid=7998
2. Contact your local newspaper, and your local TV and radio stations.
Two online sources for finding contact info for your local newspaper, radio or tv news media are:
Kidon Media-Link
http://www.kidon.com/media-link/usa.shtml
and Zap2it | TV: Nets/Stations
http://tv.zap2it.com/tveditorial/tve_main/1,1002,585%7C%7C%7C,00.html
Write letters to the editors or take out an ad. Direct readers to this website, <http://ebanusa.org/petition.htm>, for more information.
Do you have any ideas? Are you involved in local efforts to promote this cause? Please contact us to let us know what you are doing, or what ideas you may have to help further this cause.
Sincerely,
Silvia Corradin and everyone at EBAN
http://www.ebanusa.org