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
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
Dear Friends and supporters of the EB
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!
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.
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
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
Representative and your Senators, urging them to sponsor the bill!
You may find your representative here:
You may find your senator here:
You may find your governor here:
You may use the SAMPLE LETTER available HERE:
And here's a copy of the WOUND CARE BILL you may send along with it:
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
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
1. Ask your friends and family to sign the Petition in support of
the Wound Care Bill and to help spread the word.
2. Contact your local newspaper, and your local TV and radio
Two online sources for finding contact info for your local
newspaper, radio or tv news media are:
and Zap2it | TV: Nets/Stations
Write letters to the editors or take out an ad. Direct readers to this website,
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.
Silvia Corradin and everyone at EBAN
Our first benefit was a success! All
the Pictures from the event have now been posted! Click Here to see the pictures.
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
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.
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!
Our first benefit was a success! Some
Pictures from the event have been posted with more to come! Click Here to see the pictures.
FOR IMMEDIATE RELEASE
PHONE 1-813-325-1955 OR
“Lou’s Gift to EB Golf Classic” - January
– January 10th 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
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
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
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 15th, 2007
CLICK HERE for the brochure for the event
and for more information
"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!
Everyone at EBAN!
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':
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
If you would like to contribute to the
website and you did not fill out the bandage survey before, you may do
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!!
Thank you! If anyone has any questions
of any kind, please do not hesitate to contact us here:
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