Sunday, January 13, 2013

January 13, 2013: Happy Belated New Year!



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. 


  1. Thanks for the entry!!!! Yay! Yay! Yay! For the numbers raised this year through fundraising. What an incredible accomplishment. Looking at the picture of Julian on the swing, I'm amazed at how big he is. Wasn't it just yesterday that y'all had him. It seems that way for me with my 17 month old too. I feel like I've watched Ali grow. She was just a little girl it seems when we started following Bella's story. Thank y'all for still sharing your lives with us. Thank you for being at Tripp's services a year ago this week. It was there that I was able to finally meet you and give you the hug that I'd been wanting to give you since Bella passed away. I have her name along with Tripp and Quinn's on a necklace I was given for Christmas. Anytime someone ask me about the necklace I'm able to tell them about Bella. Thank you for always ending your entries with a picture of her. While it saddens my heart that she isn't here anymore, I find peace knowing she is with Tripp and Quinn.
    Love from Ponchatoula, LA
    -Sharee Wells

  2. Hi, Tim....

    So good to hear from you and see pictures of your lovely family! Glad things are going well for all of you. I think so many of us feel a connection with your sweet family, and that keeps us checking to see what's going on with you guys. Thanks, as always, for sharing your lives, struggles, and victories with us!

    Be well and be blessed!

    A friend in NC

  3. So good to see you back here Tim and I am glad you got a much needed hiatus and holiday with your wonderful family!! Keep on keeping on and doing what you are doing! You and your family just radiate hope and faith and I thank you for sharing that with me and with the world! Your journey is beyond inspiring and and am grateful I get to witness a little part of it!
    Continued belssings to you all in 2013!
    Kelley from MO

  4. Julian is the easiest.
    And the cutest ;)

  5. So glad you posted! I was beginning to worry about you guys! its always a pleasure to read your posts! you are so full of positive energy and so inspirational that each one of your posts is a delight! please please keep writting!
    love christiana (cyprus)

  6. Thanks for the year-end update on the status of PUCK. It's great to hear that donations were so much higher in 2012 than in 2011. I'll do what I can to raise awareness and keep the ball rolling in 2013.

  7. Ringgolds,

    So glad to hear that you are busy and doing so well! We still think of you often and pray for you all each night.

    The Liconas