Those with EB in need

Meet Cassie

She is a 15 yr old young women who has severe recessive dystrophic EB.  She and her family lives in Louisiana.   Her parent Logan is a single parent to Cassie and her brother Walt whom they adopted when he was a toddler.  Walt has EB too.  Logan is unable to work because caring for his children is a full time job.  They are currently facing unexpected (and costly) repairs to their only van.  He is unable to take Walt to school or Cassie to the doctors without a working van that accommodates Cassie's wheelchair.  Please take a moment to read their story and if you are able, help them financially or just by sharing their story.  You can read more about this awesome family here.

Meet Omayra:

She is a twenty something year old women with recessive dystrophic EB.  She lives here in Florida (not too far for us in fact) but the day she turned 21, Florida Medicaid cut her off from the doctors she needs to see and the bandages she need to protect and help heal her wounds for no other reason than because she was over the age of 21.  You can hear her story here and learn how you can help.

EB in the News

Covington preschool raises money for 3-year-old with skin disease

I Refuse: an EB Fundraiser

There is an EB fundraiser going on now to raise money for an EB Organization called P.U.C.K.   They are raising money for EB research!  This wonderful Woman, Christie Zink, of The Little Light Images, put together a kit to raise money for this great organization!  

Here is a picture of the kit:

Kit includes: Tote bag containing t-shirt, awareness cards, water bottle, bracelet, and a car decal. This price INCLUDES SHIPPING. To begin, select the number of shirts desired. Next, click on "order now" to select your sizes. (You can always "go back" if you need to change this number.) Please make sure that the quantity you initially selected MATCHES how many sizes you select or your total cost during checkout will be incorrect. PLEASE ALLOW 4 Weeks from the event end date for processing and shipping. Thank you!

If you'd like to order one (or they have just T-shirts available too) you can do so here

My shirt is on the way:)

EB Clinical Trials

You can search for EB Clinical Trials here

Info for the one at the University of Minnesota can be found here

(this page is a work in progress and as I locate/learn of more clinical trials I will update this page)

Here is the list of web sites for some of the kids who have undergone or are currently undergoing the transplant

#2 Sarah

#4 Keric

#5 Hannah

A Cure for Hannah

#6 Fallyn

Help Fallyn

#7 Samantha

Samantha's Caring Bridge Page

#8 Rafaella

Rafi's World

#9 McKenzie

McKenzie's Web Site

Caring Bridge Page

#10 EJ

Caring Bridge Page

(sadly EJ passed away from complications in 2011)
 

#11 Daylon
 The first Junctional baby to go through the transplant


#12 Bella
(sadly Bella passed away from complication in October 2010)


#13 Payton


#14 Elle
(sadly Elle passed away from complications in November 2010) 



#15 Charlie


#16 



#17 Nicholas


#18 Hailey


# 19 Quinn
(sadly Quinn passed away in May 2012) 


#20 Sahar 

those in-line to be transplanted: 


#21 Jackson

Please Sign the Wound Care Bill Petition for EB Patients!!

You can find it here

Thank you!!!