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To learn more about EB

~NEWS~

August 2nd

If you are having issues with your insurance company paying for bandages we have an important person for you to contact. Michelle is an expert at helping to resolve insurance issues. She is employed by National Rehab and is happy to help as she knows how difficult it is for EB patients and their families to get the proper supplies they need

Michelle Graham @ National Rehab   1-800-451 6510  X319

Call for Help with ordering supplies and getting them shipped to you on time and without a hassle or delay call

Bill Cornman @ National Rehab 1-800-451-6510  X318

February 5th
EBAN was invited to attend the 1st NIAMS National Coalition Outreach Dayin Washington DC on December 11th, 2007.

Marybeth and Silvia attended this event and we had the opportunity to expand our knowledge of NIAMS programs, and network with fellow Coalition members and discuss common goals.

Additionally, senior NIAMS scientific staff briefed us and representatives from nearly 40 Coalition groups about research progress at the Institute.

Pictured on the left are Silvia Corradin (far left) and Marybeth Sheridan (far right) at the event with DebRA Nurse Geraldine Mancuso.

December 29th

Dear Friends and supporters of the EB community,

Due to Marybeth's mother’s passing, and her daughter Samantha’s constant battle with this illness she decided to focus on her family this year, so regretfully she had to cancel the fundraiser with Lou Piniella scheduled for January 2008 but has hopes of doing the event next year.

We are still accepting applications for the Quality of Life program and in the future the program will expand to help EB families in many other ways which will be announced soon.

Without a successful fundraiser this year, EBAN needs your help more than ever. Without your help EBAN cannot provide financial support and assistance to the families and children that we are dedicated to helping across the nation. Donate today!

November 22nd

Announcing "Lou's Gift to EB" Golf Classic, an event to benefit EBAN! 

Lou Piniella, the current manager of the Chicago Cubs, is hosting the event on Monday, January 21st, 2008 at the Avila Golf and Country Club in Tampa, Florida. Several sports celebrities will be in attendance.

EBAN Inc. was formed by two women with children affected by this disease that want to see a positive change in the lives by those affected by EB. 

EBAN Inc. wants to not only provide a better quality of life for the child but a better quality of life for the entire family affected by EB.

More details about this event will be forthcoming in our Press Release coming soon.

October 25th

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

February 5th

Our first benefit was a success! All the Pictures from the event have now been posted! Click Here to see the pictures.

February 2nd

Use GoodSearch to Benefit EBAN!

EBAN is one of the charities participating in GoodSearch, a new Internet search engine that donates half of the advertising revenue it earns to charity. Each time you use GoodSearch and designate EBAN as your charity of choice, GoodSearch will donate a portion of the advertising revenue earned from the search to EBAN.

It’s easy to use. Just go to the GoodSearch homepage www.goodsearch.com and specify EBAN as your designated charity, click verify and scroll through the list of charities to select EBAN. After the first time, each time you return to the home page, EBAN will appear as your designated charity. There is even a button you can click to see the number of searches and the amount raised.

Add GoodSearch to your bookmarks or make it your homepage to make it easier to use. You may even download the nifty toolbar. Also, spread the word to your family and friends to help generate more contributions. GoodSearch estimates each search will raise $0.01 for your designated charity. 100 supporters searching twice a day could generate $730 a year, 1000 supporters - $7,300, and 10,000 supporters searching twice a day could generate $73,000!

With your help, GoodSearch can generate donations, at no cost to you that will help EB families!

January 24th

Our first benefit was a success! Some Pictures from the event have been posted with more to come! Click Here to see the pictures.

January 10th

NEWS RELEASE                                        FOR IMMEDIATE RELEASE

CONTACT: MARYBETH SHERIDAN
PHONE 1-813-325-1955 OR
EMAIL  MBSHERIDAN1@verizon.net  

PRESS RELEASE

 “Lou’s Gift to EB Golf Classic” - January 15^th, 2007  

TAMPA FL – January 10^th 2007 – Mark your calendar for a golf tournament to raise awareness for the tragic disease Epidermolysis Bullosa (EB). The EBAN (Epidermolysis Bullosa Action Network) announces its Inaugural Event for January 15th, 2007 to be held at the Avila Golf & Country Club. Lou Piniella, Manager of the Chicago Cubs baseball team and two-time American League Manager of the Year will be the celebrity host for this event. The event will feature golf on one of the most prestigious golf courses in Florida and a Silent Auction featuring many “Must Have” items, with all proceeds going directly to benefit EBAN and its current fundraising mission. This is your chance to play golf and raise awareness to help those children and families affected by this little known disease. Epidermolysis Bullosa is a life threatening disease that affects more then one hundred thousand (100,000) children. These children are missing a gene that holds their skin together causing painful blisters and open wounds. 

Lou Piniella and his family are helping EBAN raise money and awareness about ‘EB”. EBAN wants to replace the financial and emotional devastation with “Quality of Life” for EB children and their families.  

Parties interested in sponsorship packages, tickets should contact Marybeth Sheridan at 813-325-1955 or MBSHERIDAN1@verizon.net.                       

  SO BE SURE AND MARK YOUR CALENDARS FOR JANUARY 15^th, 2007

CLICK HERE for the brochure for the event and for more information

October 1st

Our "Quality of Life" Program info and Application for our waiting list has been posted on our website! 

The "Quality of Life" Program was designed to help EB families that require specific and immediate help with either bandages or other products that enhance the life of an EB patient, such as wheelchair ramps, door handles, wheelchairs, special shoes and such.

Even though our "Quality of Life" program will not be able to get started until all our applications for fundraising have been approved by their respective entities and our fundraiser has taken place (early in the new year), if you are in need of supplies or help to care for your EB child, please do fill out our application below so we may put you on our "Waiting List". 

Click Below for more information and to Apply to be on our waiting list!

http://www.ebanusa.org/qol.htm

Thank you!

Everyone at EBAN!

March 20th

The EBAN website has been updated with very useful info for the EB community. Using the information submitted by those that filled out the bandage surveys, we were able to compile two different pages worth of information. These pages are under 'Current US Healthcare System':

http://www.ebanusa.org/currentsystem.htm

One page, which was actually finished two months ago, is Information on How to find Individual State Programs. This page lists every state's website and how to find each state's children's health program. If the NAME of the State Program and information has been submitted on the Survey, that information will be below the state and link.

The second page, which was completed yesterday, is Information on Insurance Companies and what they cover related to EB patients. This page was solely created with the information submitted by those that filled out the bandage surveys.

If you would like to contribute to the website and you did not fill out the bandage survey before, you may do so here:

http://www.ebanusa.org/survey.htm

The survey not only is good information to have for the families, but it will also help us on our path to get the Wound Care Bill presented to congress. It's just one of the many steps that we'll need to make to ensure the Bill will pass. The petition is only the first step! The petition serves many purposes and will help us in many different ways. It shows there is a need and the public is supporting it. Other steps include getting the AAD to revise the bill to make sure there are no loopholes that might hinder our efforts, getting legislators to support it, and finally present it to Congress. With all the support and help from everyone, this dream will become a reality.

The petition now has over 2500 signatures! Our goal is 10,000, and we'll be starting a new campaign for signatures very soon. If you haven't signed it yet, please take a moment to do so and forward it on to everyone you know!!

http://www.ebanusa.org/petition.htm

Thank you! If anyone has any questions of any kind, please do not hesitate to contact us here:

http://www.ebanusa.org/contactus.htm

January 31st. 2006
Help us pass legislation that could mandate insurance companies to pay for medically necessary products needed by EB patients!
Sign the Wound Care Bill Petition NOW!!

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