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EB Info World Newsletter

Special Mommy Chronicles
by Silvia C.
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The Silver Ribbon Campaign

for the support and awareness of children with disABILITIES

I have found tons of great items on eBay for my son, anything from (new) wound care supplies, to Emu Oil at a fraction of the original cost. Click below and see what you may find! You can also use eBay to sell your used stuff you no longer need for some extra cash.
Click here for your favorite eBay items

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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,

EB Info World Newsletter, October/November/December 2007 (posted October 20th)

By Silvia C., Webmaster/Founder/EB mom


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

1. What's Happening In The World of EB

~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:
Scroll to the bottom and follow the instructions...

2. What's New

Nothing new at the moment, however, in the next few months EB Info World will receive a dramatic make-over!

3. What's Been Updated

~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.

4. Coming Soon

EB Info World will receive an extreme makeover!

5. Books

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.

For our library of books for patients, parents and siblings:

Lots of new books in the grieving parents/siblings section:

Many videos have been added to the inspirational/helpful videos section: http://www.ebinfoworld.com/amazon_video.htm



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.

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.

6. Miscellaneous

~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
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!

EB Awareness extended video:

EBAN fundraiser newscast:
Part1: http://www.youtube.com/watch?v=fAoawyoxVsg

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: 

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!

Please keep supporting the website, if you shop at Amazon, please use this link: http://www.amazon.com/exec/obidos/redirect-home/ebmommas01

You can purchase EB awareness products at our Stores at CafePress! Lots of cool stuff such as mugs, stickers, t-shirts, license plate frames, hats, totes and even a wall clock!
$1 from each sale is donated for the upkeep of the website:
http://www.cafepress.com/EBworld and the new store at
To see what other Cafe Press Stores benefit this website, click here!


Silvia and Nicky

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How lovely to think that no one needs wait a moment, we can start now, start slowly changing the world!
--Anne Frank

~ Please support Medical Research of Epidermolysis Bullosa ~

EB Info World was Created on 11/20/1997 
Last Updated: March 27, 2007
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