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~Newsletter~
A note from the
webmaster (October 20, 2007)
This is the last newsletter
you will receive from the
EB Info World website at least for the time being. I may decide to resume this
in the future if I find the time to do so.
Thank you for your
continuous support!
Love and Light,
Silvia
EB Info World Newsletter,
October/November/December 2007 (posted October 20th)
WHAT'S HAPPENING AT EBINFOWORLD.COM
By Silvia C., Webmaster/Founder/EB mom
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In This Issue
1. What's
Happening in the World of EB
2. What's New
3. What's Been Updated
4. Coming Soon
5. Books
6. Miscellaneous
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1. What's Happening In The World of EB
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~EBAN
(Epidermolysis Bullosa Action Network) needs your help!. You've signed
the Wound Care Bill petition, now helps us get SPONSORS for the
Bill! Head over to the website to find out how at http://ebanusa.org/petition.htm
~IT'S OFFICIAL! On December 9, 2006 The House passed H. Res 335 to declare the last week in October as “National Epidermolysis Bullosa Awareness Week”.
The Following from Debra's Website:
>>Now both the Senate and House have passed
resolutions for the national week. Our thanks to Rep. Tim Bishop, Rep.
Peter King and Senators Schumer and Clinton for their support in making
this a reality. This represents an important step on the road to greater
support in Washington for EB research. And most of all we thank all the
families who wrote letters, made phone calls and sent emails to support
this effort.<<
In honor of EB Awareness week, there
will be a Rally, click
here
for more information
~Sephora Cosmetics to donate proceeds to EB
Research
All profits from the new CARGO Eye Shadow Palette - Coco, $28, a
chic set of muted and metallic tones, will be donated to the EB Medical Research
Foundation, which spreads awareness and raises funds for a
rare skin disease called Epidermolysis Bullosa. "The EB
Foundation is so important to me because it touched the life of a
personal friend's child," says Courtney Cox. "And the
fact that it is a rare disease makes awareness limited, so it does
not get the funding that it deserves and needs. I hope this
palette inspires people to get involved."
EB has been in the news quite often lately... if
you would like to be notified of EVERY News story that I come across,
subscribe to the EB News group at:
http://lists.ebinfoworld.com/listinfo.cgi/ebnews-ebinfoworld.com
Scroll to
the bottom and follow the instructions...
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2. What's New
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Nothing new at the moment, however, in the next few
months EB Info World will receive a dramatic
make-over!
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3. What's Been Updated
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~Several page are always
updated, this month the following pages have new content:
EB Virtual
Quilt: New squares are added
monthly!
Memorials : 1 New Angel
Added
~If you would like to update a patient's photo or
add a patient's photo on the children with EB pages, please contact
me.
For a child with EB Full name, birth date, form of
EB, where the family lives, and names of siblings (if any) and
parents, along with any comment you would like to add. Your email
address will be automatically added unless you specify not to.
For Memorials Full name, birth date, death date,
form of EB, where the family lives, poems, and anything you like.
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4. Coming Soon
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EB Info World will receive an extreme
makeover!
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5. Books
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 Living with
Epidermolysis Bullosa (Paperback)
by
Silvia C.
Living
with Epidermolysis Bullosa has first-hand accounts written by
parents and patients who are living or have lived with EB, and was
compiled to help people in general understand how it is like to
truly live with every form of Epidermolysis Bullosa; from the
milder Simplex variants, who are nonetheless not simple to live
with, to the more lethal, namely Junctional, whose patients
usually succumb to before their first birthday. The stories you
will read are from proud parents, or patients and their struggles
and how they are coping. Some stories are sad, some are
encouraging, and everything in between.
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For our library of books for patients,
parents and siblings:
http://www.ebinfoworld.com/amazon.htm
Lots of new books in the grieving
parents/siblings section:
http://www.ebinfoworld.com/amazon_grief.htm
Many videos have been added to
the inspirational/helpful videos section: http://www.ebinfoworld.com/amazon_video.htm
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LILLIAN SPARKS Books
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 Tough Cookie
by Lillian Sparks
This biographical book tells the story of Byron Todd Sparks,
a.k.a. “Tough Cookie,” and his family’s journey of faith amidst
Recessive Dystrophic Epidermolysis Bullosa, a painful, incurable
skin disorder. Paperback.
Purchase this Book Used
at Amazon
(around $2.00 on average)
Please note: the cover art
may be different on earlier editions of this book.
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 Parents Cry Too
by Lillian Sparks
A follow-up to Tough Cookie, this biographical book details
how the “Tough Cookie” miracle touched the hearts of thousands
of people, encouraging their faith in God. Paperback.
Purchase this Book Used
at Amazon (under $1.00 on average)
Please note: the cover art
may be different on earlier editions of this book.
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6. Miscellaneous
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~The EB Database is a GREAT success! So far we have
about 225 entries. If you have not joined yet, please visit the
link below for more information
http://www.ebinfoworld.com/database.htm
If you need to update the information, simply send me email to
Silvia at ebmomma@yahoo.com with the subject: EDIT INFO ON
DATABASE and please state the name of the patient with the
information to add or edit. Please be specific!!
~EB Info World is now
172 pages worth of information! Help us grow by submitting your story!
http://www.ebinfoworld.com/submit.htm
EB Awareness extended video:
http://www.youtube.com/watch?v=Gf1G_7czSfk
EBAN fundraiser newscast:
Part1: http://www.youtube.com/watch?v=fAoawyoxVsg
Part2: http://www.youtube.com/watch?v=cTU2lLb3dQ4
If you have a website about EB or about yourself
and you happen to have EB, and are not already a member, please
consider joining the EB webring! Let's keep united! Click
below:
http://n.webring.com/hub?ring=eb123
Please remember, the navigation code must appear on the same page
you register with Webring.
Don't forget to visit the EB Info
World Message Board and say Hi!!
Visit our Forum!
Warmly,
Silvia and Nicky
Click to subscribe to the
EB Info World Newsletter
EB Info World fully supports EBAN's
mission
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