January 13, 2013: Happy Belated New Year!

Heaveno!

I'm BAAACK!

Sorry for disappearing.  Got busy.  Then busier, then burnt out.  Thanks for the words of encouragement from those who commented about my absence.  I really appreciate it.

Life's been good to us.  Holy cow, so much has happened since I last reported to you.

Here are some short summaries:

1.  PUCK had an amazing luncheon in Minnesota in December called Wings of Hope run by the amazing duo of Jen Nick and Christie Zink.  Dr. Tolar, Marc Seymour, and Trisha Knuth were our speakers.  It was an amazing event and one that Ang and I really were bummed we couldn't attend in person, but we had long blown our travel budget with our two trips over the summer.

2.  I gave my first TEDx talk!  TEDx is an independently licensed, organized and produced TED event.  For those who don't know about TED, well, CLICK HERE to get the quick wikipedia blurb on it.  The theme of the event was "The Intersection," so I gave my talk on music therapy being the intersection between art and science.  It was a youth event, so I specifically wanted to "create music therapy" for the next generation in a way that would capture their attention and plant the seed as a possible career for them.  The talk will go live on the internet (hopefully) on February 15.  I'll keep you posted.



3.  We had a wonderful 3 weeks of holiday break for Ali.  I took the first week off and Ang took the next two off and had a staycation.  She spent much of the time with Ali working on craft projects for the back yard, and cooking some wonderful holiday foods (and lots of cookies).  Ali had a "big kid part" in the church Christmas pageant this year.  She was promoted!  We had two great trips to Sea World, and our first trip whale watching!

4.  Julian is 16 months, and just a delight.  He's walking and talking and wearing 24 month clothes and every single day I am completely over the moon smitten over this little guy.  It continues to be such a strange journey without Bella and with Julian.  He's easy-going and easy to care for - by other people's standards... meaning, when others babysit, they just marvel at how much fun he is to be with and how easy a baby he really is.  It's hard to articulate just how much we are aware of that, given what a challenge Bella was because of EB.  Bella was easy, too, but her EB on the other hand, ... not so much.



5.  PUCK finished the year raising $115,000.00 for Dr. Tolar's EB research, and EVERY PENNY was matched by the generous challenge grant issued by EBMRF and JGSF making the total $230,000.00!  Our goal for the year was $100,000.00, so we have beaten our fundraising goals two year's running, and we also experienced 100% growth in our fundraising as we raised $57,000.00 last year.  This means a lot to us, because when we got involved with PUCK, we set a three year plan to grow 100% year over year, and we really didn't have a flying clue how to do it, but we knew enough that "the how" shows up in life when you have a big enough "why," and while I've heard endless cliche's like that over the years, it's really happening.

So, THANK YOU THANK YOU THANK YOU to each and every one of you who has shared our story with a friend or colleague, held a fundraiser, made a pledge or donation, bought my book, etc.  When Bella died, I asked Dr. Tolar what he needed in research funds to make this journey safer, AND what would it take to get him in a position to really step into the future of gene therapy, which most of us believe is the future for a cure to EB, and he quoted $1,050,000.00.

Well, just over 2 years since that conversation was had, and thanks to the combined attention and efforts of ALL the EB charities, DebRA, EBMRF, JGSF, PUCK, and all those who have contributed individually, he's there.  My biggest fear after Bella died was that he would run out of funding and the trial would end and EVERYTHING we and SHE went through would be for naught.  That's why we've been practically obsessed over this fundraising thing since then.  We believe in Dr. Tolar, and we believe his on the right track, and we want to give him every chance to be the guy that finally cracks this code.  I think it is fundamentally healthy to the human soul to be involved in things that are bigger than one's self, and I think this pretty much qualifies as THAT!

Thank you for (still) being here.

God night.