December 15, 2013: SHOUTING TO THE ROOFTOPS...

Heaveno!

This post is a straight up honor and shout out to Christie Zink.

Christie is the Relationship Manager at PUCK, and an absolute Saint-in-Progress.

Christie organized and managed a fundraising event in Minnesota yesterday called Wings of Hope to continue to support Dr. Tolar's research to find a safe, effective, systemic treatment for severe EB.  There were 50 guests, and from the photos I've seen on Facebook (thank you to Trisha Knuth, Vanessa Delgado, SooAnn Roberts Pisano, and Amanda Clark Pfeiffer for posting pics!), it looks like it was totally warm, fuzzy, yummy, moving, inspiring, and every other juicy word I can think of.  Not only that, but it looks like, thanks to an unbelievably generous matching grant, more money was raised at this single event than at any PUCK event to date.

Christie, I don't know where you find the time or energy, but you are just about the most passionate person I know, and I am so honored to work with you and I am so inspired by your commitment to Dr. Tolar cracking the code and delivering a treatment to this amazing community of EB families.  We both know that it is SO much bigger than that, though.  We KNOW that this line of treatment has the potential to open doors of treatment to so many more than just those with EB.  It's bigger than any of us.  Thanks for being able to see the view from that high elevation, and still able to get right down into the trenches of the tiniest and thoughtful details.

Thank you for all you do… not just what you do, but how you do it.  You have a GIGANTIC heart that is LITERALLY overflowing with love.  It spills out onto all whom you touch.  It is humbling to witness.  All of us who are lucky enough to know you are better men, women, and children for it.

I just returned home from a seminar that I first attended 3 years ago at this time to learn how to share Bella's journey from the stage and raise money and awareness for Dr. Tolar's work.  In 2010 and 2011, I was given the opportunity to speak on this stage in front of 600 other speakers, authors, and entrepreneurs by the generous host, James Malinchak.  Yesterday, I got to sit in the lobby and report to one friend I met there 3 years ago that Dr. Tolar has received over a million dollars in funding for EB since he and I first met.  Who cares how much was given by whom, that's not the point.  The point is that the Dr. who is breaking new ground in EB research for severe EB has the funds he needs to stay on course and 'stay in business.'

The reason I mention that is because there was another guy there this weekend who also ran a small charity, and in that same time period, went out of business.

Thanks to people like Christie Zink, I don't go to bed worrying about that happening to Dr. Tolar's EB lab anymore.

God night, and God bless you, Christie.