|ISABELLA & OLIVIA
CLICK HERE FOR..
"YOU CRACK ME UP!!"
CLICK HERE TO READ ABOUT
THE PGD & IVF PROCESS, AND
BELLA & OLIVIA'S ARRIVAL.
| SITE DIRECTORY
Butterfly Garden - A page that summarizes what the site is about, along with expressing
our expriences with a few organizations, medical staff, family, friends, and websites
through the most difficult time of our lives.
Ava's Story- The story of our daughter's fight with Epidermolysis Bullosa.
The Tree- A page where you can meet Ava's Family thru a gallery of pictures.
Gallerfly- A gallery of pictures of Ava along with family, friends, and the medical staff.
Ava Flyby- This page where Ava leaves messages relating to a family or friend's birthday,
anniversary, or any special occasion.
Ava Fun Facts- A page that states all of Ava's favorites along with some of the artwork
that was created for her.
Thoughts In Words- This page was created to display some of my writings that were
inspired through Ava's journey.
Wings of Love- This page is a forum for other EB families or patients to share their story
THE LINX - A page that contains links to personal EB sites.
EB Billboard- This is an informative page that lists several EB links, Charities, Fund
Raising events, and Current EB affairs.
EB POST This page is updated frequently with EB NEWS LINKS that are going on
throughout the world.
EB Friendly Products- The link for this page is located on the EB Billboard and
EB@EB.com. It advertises several products that are EB Friendly, such as shoes, childcare
products, and more.
EB@EB.com- This page is to educate the public about Epidermolysis Bullosa. It explains
what EB is and does. It does not go into extensive detail, but it does contain various links
EB-ONE (EB of New England)- New EB Support Group for families located in the
Massachusetts, New Hampshire, and Rhode Island area.
WHATSUP?- This page is set up to keep everyone up to date on what EB.com is up to.
Contact Us- The contact page is set up to allow others to communicate with us. Whether
it is a question, story, picture, concern, or even a request for us to link there site or
advertise their benefit. We are want to help as much as possible, so we hope to hear from
Build Hope- This page list a few organizations that are dedicated to assist EB families
and improve the quality of life through programs, support, and research. These non-profit
organizations need everyone's help in order to provide these services. Whether it is a
dollar donation or volunteering your time, please become an EB Builder of Hope!!!
Remember When- This is a page where family and friends can post anniversaries,
birthdays, engagements, etc.
11-17-06 Header Design Change
01-09-07 Added pic of Deb P and Ava
01-26-2010 Butterfly Benefit March 27th, 2010
Rock Cats go to bat for child in need Bristol Press
Butterfly skin won't keep me from school
Central Europe draw up rare diseases battleplan France24
5K Run/Walk honors memory of Macie Majeres
Team Kyle Nears Fundraising Goal
THOUGHTS IN WORDS
7-14-06 Ava's 2nd B-Day Anniversary Poem to Mom
07-07-07 Happy Birthday Dev, Olivia, & Isabella
Wings of Love:
04-30-07 Added link to www.BeautifulDaisy.com
May 2005 Added more email address contacts
03-10-09 Added pics of Devin and McKenzie
05-04-08 Alfred Lane, MD, Discusses EB Research and Treatment Video
Spread Your WIngs
03-27-07 Welcome Erin Pimentel as new contact for
EB Friendly Products
03-09-09 Added link for Hollister Wound Care
03-27-07 Founder Information Updated
01-09-07 EB Awareness Video and Jennifer D. Golf Tourney Update
08-26-06 New page
NOW AND THEN, REMEMBER WHEN
11-20-09 Dad & Ava's Anniversary Pic
|AWARENESS IS THE KEY TO SUPPORT, WHICH IS THE KEY TO FINDING A CURE!
Through the Eyes
of a Patient
|All profits from the sales of
All Pro Sunscreen will be
donated to the Western
Horizon Ranch for Kids with
Serious Skin Diseases.
|LESLIE RADER &
LESLIE RUNS THE NEW
PROGRAM FOR DEBRA.
READ MORE ABOUT
LESLIE ON THE EB
BILLBOARD AND HER
DAUGHTER LAUREN ON
THE WINGS OF LOVE.
|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
|CLICK HERE TO LEARN HOW YOU CAN HELP BY
BECOMING AN EB AWARENESS SUPPORTER!!!
|Christina we love
you and you'll
24 YEARS YOUNG
"FOR AVA NIGHT"
|THANK YOU TO ALL OUR
SUPPORTERS, VOLUNTEERS, AND
EVERYONE WHO ATTENDED.