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Run For EB

Hello everybody, and welcome to this year's fundraising page! 

We took a couple of years off for the COVID, but now we're back... with a vengeance!  Well, maybe there's no vengeance, or maybe there are several. To be honest I am not 100% on what vengeance means... hold on... OK, looked it up and it has nothing to do with our situation. However, it still works as a Die Hard reference. There was a reason I started writing this, but it seems to be eluding me. Oh yeah, the third Die Hard is the best and the last two(?) don't count as part of the franchise.    

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Fundraising For DEBRA of 'Merica
here's the plan...

It was brought to my attention that I was creating this page as a place to solicit donations for dEBra.org  and not as a Die Hard rating platform, I am still a bit confused as to how that happened... 

Anyway, if there was anything I have learned from the last few races is that the further I attempt to run and the more misery I put myself through the more likely people are to donate. So with that in mind, I will be attempting the Grand Canyon Rim2Rim2Rim run on Oct. 8th. This is a 48mile, 11,000ft elevation gain, round trip down the canyon, across the canyon, up the other side, snack break, back down the canyon, play in a waterfall, run across the canyon, back up, then dinner.

 

We are aiming for a fundraising goal of  $2500 this year, so tell your friends! If I am lucky I will have some friends joining me on the run. So always know, if you would rather join the run over donating, you are beyond welcome. 

What's an EB?

For all the sciency stuff and actual details, it may be best just to visit debra.org Here I will give you a quick glimpse of our personal story. 

EB (or Epidermolysis Bullosa) is "the worst disease you never heard of" and is something that both myself and my crazy, sweet, adorable, silly, big-hearted daughter, Ellie, were born with. We have DDEB which is the milder form and although always present and at times quite painful, still enables us to live a relatively typical life.  But we are, as they say, the lucky ones. There are many people, mostly kids, out there that have it much worse (do a quick google image search for Epidermolysis Bullosa and you'll get a good idea of how much worse). And that's why we try to do what we can to fundraise and create awareness for those kids and families who need it most. For example, did you know that wound care supplies for those with EB can have a retail cost in excess of $80,000 per month! That's crazy...

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