Wednesday, September 15, 2010

fun fundraising opportunity

Hi Friends,

I need your help. An EB/Internet friend of mine is doing an incredible fundraiser for United Survivors with Epidermolysis Bullosa. United Survivors with EB is a nonprofit organization, run mostly by folks with EB, whose mission is to "provide services that will assist people with EB in becoming more self-reliant through social, cultural, recreational, rehabilitative, educational and occupational opportunities. We value self-reliance because it inspires individual productivity, builds self-esteem, stimulates human happiness, and heals the dignity of the soul. These benefits particularly enable people with EB to not merely cope, but to rise to a position where they can succeed independently, help others to do the same, and contribute to society in worthwhile ways."

So Chris is this friend of mine who is doing the fundraiser. Chris does not have EB. But he was at the Twin Towers on September 11, 2001. When the buildings started to fall, Chris hid under a car for protection. When he came out, all the cars around him were flattened. Why had he been spared? He knew his life would never be the same.

Fast forward two years, he found out about Epidermolysis Bullosa through a little girl named Grace (, and decided that he would dedicate as much of his life as he could "to all the Butterflies of the world. Their 9/11 is every day." Since then, Chris has done so much to raise EB funds and awareness. He was integral in creating a social networking site, that I am proudly a member of, just for EB sufferers, their friends, and family. It is an amazing place of discussion, support, and understanding for all those fighting this nightmare that is EB.

Well now, he's at it again. For EB Awareness Week, which is the last week of October, Chris has agreed to do any dare (that is "legal and tasteful, yet embarrassing") to raise money for USeb. You can go to his fundraising site HERE to come up with a dare for him or to vote on one or more of the dares that are already there. Whichever dare gets the most money is the one he will carry out. You have to donate to submit a dare or to vote.

Will you consider voting for one of the dares or coming up with your own? He's specifically trying to help USeb reach their goal of "setting up a house where adults and older teens with EB can live and learn how to become independent and self reliant. The house will be staffed by adults with EB who have already achieved this level of living." Sounds pretty incredible, huh?

If you go and donate, whatever amount you can, come back here and comment. I'll give away a $20 Target gift card to one random donor, but make sure you comment here so I'll know. Please don't comment on this post unless you donate. (And I'm sorry it's not more than $20, but $20 to the Greatest Store on Earth is pretty much as good as $100 to anywhere else, right?)

So go HERE to vote and then come back here to leave a comment when you're finished. I will close comments this Saturday night (the 18th) at 9:00 pm, Eastern.

Happy voting (and giving)!

Comments are now closed.


If I knew then... said...

Thanks for the beautiful blog post!
Chris (PEZ)

Wanda Wilkinson said...

Ok blog stalker, go donate & is easy!!

trooppetrie said...


Jen said...

Hi Patrice,

I've read your blog for a while and have just fallen in love with Jonah! Such a sweetheart! Your posts often inspire me (and Jonah always does :) )
I was happy to donate and wish it could be more. I'm sure all of us who donate will be happy to see the $20 card go right back to something fun for Jonah or to the fundraiser itself.


Nora Lee said...

Hi Jonah! I just voted and donated. But tell your mom if she draws my name for the $20 gift card that I am giving it to you. Your mom will be thrilled to take you shopping at Target.

Ellen said...

I voted and donated. I read the site about Grace and I noticed she lived not far from me! I think it is wonderful what Chris is doing! If my name gets picked, please buy something for Jonah or yourself Patrice or Chris...I'll leave it up to you!

EmilyRose said...

I have been reading your blog for quite a while now and have never left a comment. Your strength inspires me. Would you please read this blog

There is a 1 month old little boy in Uganda who has recently been diagnosed with EB. A dear woman who runs the Serving His Children ministry is helping his mother take care of him. I am hoping that you might provide some encouragement and perhaps resources (informational or otherwise as you feel led). I cannot fathom the challenges of having a child with EB, much less having a child with EB and living in such a poor country!