October 30, 2012: Happy EB Awareness Week!

Heaveno!

Holy cow, time just flies faster and faster!  I hope this update finds you all well.  My prayers go out to those of you caught in Sandy's crossfire.  I hope you're okay, your families are okay, and that you have what you need until life returns to normal in the aftermath of one heck of a storm.

SO much to write about.  I apologize for slacking.  The travel schedule has been brutal and non-stop.  I've been driving back and forth to Phoenix to rehearse for this weekend's reunion/benefit concert to wrap up EB Awareness Week.  I can't believe the show's almost here.  I've been rehearsing and preparing for it for FIVE months, and I feel close to ready, but there are some details still getting ironed out, and I am mighty stressed out.

PUCK held EB Awareness Week in style at the University of Minnesota this year!  I am so excited as this is something we had envisioned over a year ago, and finally the timing was right.  We had an EB Awareness booth set up in the student union on campus all week.  Literally hundreds and hundreds of business cards with our website and text to donate campaign were handed out, and countless amazing conversations were had with those who stopped by the booth.  Big thanks to Christie Zink, Jen Nick, Courtney Billing, Kasey Guenther, and the Alpha Gamma Delta sorority for all the hours of preparation and time donated to raise awareness at the U about such great work being done there.  Of the many stories I heard back from the ladies, many of them revolved around this sense of school pride that students felt after learning what meaningful research was being done right there at their own school.

In other PUCK related news, our new Relationship Manager, Christie Zink, has been nominated in a Yahoo "Women Who Shine" competition!  The grand prize is $10,000, and Christie has already promised Dr. Tolar that if she wins, she's donating the money to his research!  PLUS, there is still about $80,000.00 left on the table in the matching grant challenge, so that $10,000 will become $20,000 for EB research...

...if she wins...

Here's where you can help make that happen.

Christie was in the lead for a while, but some others have come on strong over the weekend and knocked her out of first place!  Would you help her regain the lead?  CLICK HERE to vote.  The catch is you have to sign in, but you can use your facebook account or google+ (I think) account to do so - you don't need to fill out a bunch of fields.  I just linked my facebook profile by clicking on that option and it was EASY.  Please take a minute and vote for Christie.  First of all, SHE DESERVES IT.  The woman is a TIRELESS ADVOCATE for EB and isn't even an EB parent, bless her heart.  She routinely manages multiple fundraisers and awareness campaigns on and off line, and just gets it done because it needs to be done.  Even though we've only officially announced her position at PUCK recently, she has been working her tail off all spring and summer on several campaigns and still found time to fly to FLA to take pictures for DebRA at the Patient Care Conference.  Her heart is as big as the state she lives in (MN), and she does all this while raising 3 small kids while her husband travels for work!  (She still won't reveal her secret on how she gets it all done...)

Again, CLICK HERE to vote for Christie, and thank you in advance for this.  Also, please share the link on facebook or your blog or email list, whatever works for you!  Here's the link:

http://yhoo.it/VCymnB

Alright.  Need sleep.  Please say a prayer for those whose lives were turned upside down this week by Sandy.  While I stress out about our concert, I am reminded how lucky we are to be having a concert this weekend in the first place.

God night.