| AWARENESS IS THE KEY TO SUPPORT, WHICH IS THE KEY TO FINDING A CURE! |
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Established March 2005
| AWARENESS IS THE KEY TO SUPPORT, WHICH IS THE KEY TO FINDING A CURE! |
VIA VIDEO: Simply by requesting our free awareness DVD or CD, you can PASS IT
FORWARD to friends and family, who can do the same. We will email the video free of charge
(outside the US may have shipping cost), and then all you have to do is watch it and pass it on.
Get your EB Awareness Video Now!!!
Since it is a free video, we must limit one per person/address.
Email us your request including your name & address. If shipping outside the U.S., a shipping
cost may apply.
FORWARD to friends and family, who can do the same. We will email the video free of charge
(outside the US may have shipping cost), and then all you have to do is watch it and pass it on.
Get your EB Awareness Video Now!!!
Since it is a free video, we must limit one per person/address.
Email us your request including your name & address. If shipping outside the U.S., a shipping
cost may apply.
EB Awareness Slide Show
| NATIONAL EPIDERMOLYSIS BULLOSA WEEK 2007 |
| WALK A Mile in My Shoes Relay Ralley!! EB Awareness Week - October 25th - 31st. Learn more about the relay and how you can help at www.ebrelay.org |
A Monsta Midget Design
www.EverlastingButterfly.com
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.
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.
Purchase book directly from the publisher or Amazon.com for $19.99. Click on the
book to purchase. All proceeds from the book go to an EBAN's Quality of Life
Program that assists Eb families.
book to purchase. All proceeds from the book go to an EBAN's Quality of Life
Program that assists Eb families.
AVA'S STORY IS ONE OF MANY IN THIS BOOK.....
| THE BOOK IS NOW AVAILABLE THROUGH !!! CLICK HERE TO PURCHASE |
In 2005 and 2006, many American families who have been impacted by Epidermolysis
Bullosa, a rare but extremely devastating genetic disease, worked hard to convince
legislators to enact National Epidermolysis Bullosa Awareness Week, in order to raise
public awareness and understanding about the prevalence of EB, the impact it has on
families, and the need for additional research toward finding a cure.
In 2006, the House of Representatives and the Senate voted to formalize the last week of
October of every year as National Epidermolysis Bullosa Awareness Week.
This is the inaugural year of our special awareness week, and the people of the United
States and interested groups are encouraged to support the week through appropriate
ceremonies and activities to promote public awareness and to foster understanding of the
impact of EB on patients and their families, especially by participating in the EB Relay and
associated Rallies!
Information gathered from http://www.ebrelay.org/how.html
© 2007 EB Awareness Week Relay & Rally
All rights reserved.
Bullosa, a rare but extremely devastating genetic disease, worked hard to convince
legislators to enact National Epidermolysis Bullosa Awareness Week, in order to raise
public awareness and understanding about the prevalence of EB, the impact it has on
families, and the need for additional research toward finding a cure.
In 2006, the House of Representatives and the Senate voted to formalize the last week of
October of every year as National Epidermolysis Bullosa Awareness Week.
This is the inaugural year of our special awareness week, and the people of the United
States and interested groups are encouraged to support the week through appropriate
ceremonies and activities to promote public awareness and to foster understanding of the
impact of EB on patients and their families, especially by participating in the EB Relay and
associated Rallies!
Information gathered from http://www.ebrelay.org/how.html
© 2007 EB Awareness Week Relay & Rally
All rights reserved.
WAYS YOU CAN HELP BE AN EB AWARENESS SUPPORTER
| There are several ways that everyone can easily, but effectively spread awareness. From word of mouth, email, posters, etc. So we have included several ways that would effectively spread EB Awareness. |
VIA EMAIL: Now a days, everyone has email. It is more common than writing a
letter or picking up the phone. With a few clicks of your mouse you can send an email
to everyone in your address book. So simply by cutting and pasting this page's link
www.everlastingbutterfly.com/ebawarenessweek , www.EverlastingButterfly.com,
along with the poster print at the top of the page to an email, you can reach out to
people all over the world.
letter or picking up the phone. With a few clicks of your mouse you can send an email
to everyone in your address book. So simply by cutting and pasting this page's link
www.everlastingbutterfly.com/ebawarenessweek , www.EverlastingButterfly.com,
along with the poster print at the top of the page to an email, you can reach out to
people all over the world.
VIA POSTER PLACEMENT: Click here to open up an print an 8.5x11 EB
Awareness Week Poster. Ask local business to post them on their community
boards, such as grocery stores, corner varieties, etc.
Awareness Week Poster. Ask local business to post them on their community
boards, such as grocery stores, corner varieties, etc.
VIA BOOK SHARE: You can purchase & read these incredible real life stories in
Living with Epidermolysis Bullosa, and then lend out the book and ask for them to pass
it around. All it will take is for them to read one story, and they will be inspired to learn
more about this devastating disease.
You can also take part in Everlasting Butterflies "EB Book Share". It's very simple,
you purchase the book and donate it to a local high school, college,library, or even
hospital. Simple, easy, and effective. Even easier, you can also purchase the book, and
send to us, and we will donate in your name.
Email Us To Find Out More!!! EBBookShare@everlastingbutterfly.com
Living with Epidermolysis Bullosa, and then lend out the book and ask for them to pass
it around. All it will take is for them to read one story, and they will be inspired to learn
more about this devastating disease.
You can also take part in Everlasting Butterflies "EB Book Share". It's very simple,
you purchase the book and donate it to a local high school, college,library, or even
hospital. Simple, easy, and effective. Even easier, you can also purchase the book, and
send to us, and we will donate in your name.
Email Us To Find Out More!!! EBBookShare@everlastingbutterfly.com
| VIA WORD OF MOUTH: Of course, there is always the obvious. Tell whomever is willing to listen. Send them to us, and let the website to the rest!!! |
| WATCH VIDEO BELOW ABOUT OCTOBER 25th-31st BEING DECLARED AS NATIONAL EB WEEK!!! |
| THANKS FOR YOUR SUPPORT!!!! |
