Monday, December 7, 2009

Raising funds for EB

The other day I received a comment from my buddy Blanca regarding raising funds for EB.  Thank you so much for asking Blanca!  You are so sweet and your comments always bring a smile to my face - but since you gave me your number in the last comment, and I didn't know if it was your personal cell or home number; I didn't want to publish it for the sake of your privacy.  I am, however, more than happy to answer your question!

So I guess there are a couple of ways to go about it.  Anyone can either donate to EB in general, or donate to specific EB families.  So .................

Anyone can always donate to DebRA - as their website states: 89.2 cents of every dollar goes towards supporting EB families as well as research for a cure.  DebRA is a great organization - for example, when an EB baby is born, they send out a care package to the family full of wound-care products to try out and other EB necessities that families just don't know about as they are bringing their new baby home. 

DebRA also offers these bracelets for purchase on their page:

The bracelets are only $1.00 a piece and they are a great way to spread awareness.  You could buy a couple dozen and take them to your church, synagogue or workplace and sell them and in turn donate the money back to dEBra.  It's win-win -- raising awareness and raising funds. 

Or ..... you can donate to EB families.  
We have a donation button for Leah on our page, and there is a support group for baby Jonah that handles donations, as well as selling these magnets to help spread the word on EB while raising money.  Sweet little Daisy accepts donations on her page as well.
Each family is different so please check their pages for info on if or how they accept donations.

We use any money people have donated so graciously to us to defer some of the cost of the things we have to purchase to care for Leah.  And of course different families allocate the funds in different ways.  Some families need to offset the cost of wound-care supplies -- which are crazy expensive. 

We are blessed that our insurance currently covers everything from our God-send of a nurse: Ann, all the way down to the dozens of rolled gauze we use every month. 

However .... there is a barrage of 'everyday' things that EB families go through like crazy that no insurance of any kind would ever cover - our biggies are: Baby Tylenol, Baby Motrin, Baby Benadryl, Aquaphor, Diaper Cream, Vaseline, Aveeno Baby Products, Vitamins, Antibiotic cream, Anti-itch creams, Eye drops, Eye ointment, Baby wipes, Hand Sanitizer, Disinfecting wipes, Stain removers; etc. 

So there you have it!! And thank you so much for asking!!
(If I find more blogs/sites of EB kids who accept donations I will edit this post to include them).


Thanks again to everyone for their love, prayers, support and dedication -- I'm in awe of all the love coming our way.


Today is tree decorating day!! I will post pictures of it once it's completed but I'm waiting on a delivery of some ornaments so it may not be today or tomorrow.  : )


Linda said...

Hi Love:
Thanks for all the donation info. I always have the DEBRA bracelets on my desk and my co-workers buy them and help spread the word about EB. They are very affordable and the money I receive goes towards Leah's care. Give my beautiful granddaughter a big kiss for me. Love you!!!!!!! Love Mom

Anonymous said...

Thank you for the information. I am determined to help raise funds to help cure EB. Where I work at they have this special thing where they will donate $250 to any organization of your choose per employee. I will try to get as many people to donate there $250. I will have to wait until January though and mean while I will make a banner or something for other people to pitch in as well. I have been doing some research as well and I came upon this web site: Have you heard of it? Is this true? I want as much money to go EB cure as possible. Please know I pray Leah and all EB babies. If you ever need anything please feel free to call me , that is my cell number. Maybe one day my little Aydin can meet Leah and be good friends. Love, Blanca

Jenny said...

I just found your blog through Jonah's blog and your little Leah is a doll! She's gorgeous! Great post about the donation information too!

akasuperman said...


A truly well written post! I am running a bracelet awareness site, and if you wanted to submit an article to it, let me know!

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