I Refuse...

I know I have not posted in a bit, but I have been very focused on two very exciting endeavors (with a couple more on the back burner). I did however want to post a very quick thank you to all of those who have supported me as I prepare for this years Time To Fly in Saint Paul.  Although the event is a walk, I have registered for the run as a personal challenge to myself.  I am incredibly grateful to everyone who has helped me in my fundraising efforts as well as those who have made the commitment to join our team.  The race is June 30th on Harriet Island and so there is still time to register or donate if you would like.  This year we have a very rare opportunity to double our fundraising efforts thanks to a matching grant offered through EBMRF and JGSF.  That means that every dollar that we raise will be matched and 100% goes to EB research.  That my friends is pretty incredible.  Please consider supporting me and visit my page:

Christie Zink - Time To Fly -Team PUCK

I have also been working on an awareness campaign that was "launched" on May 27th to honor Bella Ringgold's 3rd birthday.  I say launched because as soon as people received the kits that I put together , it was obvious that I was far from done. This was just the beginning of something that had the potential to be amazing!  I have received so many requests to open ordering again and how could I possibly say no to something that would bring about awareness and potential research dollars?  Well, I couldn't, so if you would like to participate in the I Refuse awareness campaign, please check it out...

2012 I Refuse Awareness Campaign

Your Kit will look a little like this...

I think my little man says it best...

Thank you to all of you who are committed and dedicated in the fight against EB!

A little sunshine, a little hope...

Isn't is amazing how your life's path can be altered simply by "chance"?  Really, is it all just coincidence?  I happen to think it is not by chance at all, I happen to think that there is a plan that is unfolding, a plan set in place long ago.  Opportunities present themselves for a reason.  I have had so many doors open for me and so many opportunities to allow my life to be touched in special ways and I truly believe that it is not just luck or coincidence.  It is much more profound than that. I know that this is part of my purpose and there are some who do not understand and that is okay.  All that matters is that I understand, I follow what is in my heart and that I believe in what it is that I am passionate about.

Throughout this amazing journey I have been fortunate enough to meet some pretty extraordinary people and yesterday was no exception.  Charlie Knuth's spirit is one that can truly lift the heaviest hearts and light up a room in the most beautiful way.  He just sparkles and it is completely contagious!
Yesterday Charlie gave me a gift that was very much needed.  Seeing him and being swept up in his joy gave me a sense of hope that I think that I desperately needed.  His smile told me that everything that I believe in and everything that I fight for is worth it.

Two tears ago Charlie was suffering terribly and he was covered head to toe in bandages to protect his fragile skin.  All of the things we take for granted we re luxuries for Charlie.  Today, Charlie is an exuberant little boy with boundless energy because his mom and dad fought hard so that he could be a part of the clinical trials in Minnesota.  They fought hard to give Charlie hope and to give him a chance to be a kid.

One look at him and you can see the tremendous amount of happiness that he exudes...

Thank you Charlie for bringing me so much joy and giving me such a remarkable gift.

Charlie was not the only ray of sunshine in my day yesterday.  I would like you to meet Sahar, she is one of the sweetest little ladies and even though she is suffering, you would never know it from her beautiful smile.

Sahar is just over 60+ days and her journey is far from over.  I would love for you to take a moment to get to know her and visit her page: Sahar's Caring Bridge

As with many families going through this process, they are struggling emotionally and financially. 

A fund has been set up to help Sahar's family with medical bills and that information can be found on her page.

Sahar and children like her deserve a chance, a chance to be a kid.  They deserve a life without blisters and bandages; a life without pain.  Please take a moment to visit www.puckfund.org to learn about how they support the research in Minnesota and you can also visit the University of Minnesota Pediatric Blood and Marrow Transplant Center to learn more about this research.

If you would like to learn more about Epidermolysis Bullosa, you can visit www.debra.org

The time is now...you can make a difference, you can be a part of the cure.

The fight continues...

Yesterday was quite bittersweet as I said my final goodbye to sweet little Quinny.  It was an incredible honor to be there with her amazing family and friends...her Butterfly Army.  Such a precious soul who brought an entire community together to fight.  In her short time here, she inspired so many hearts to take action.  Because of Quinn, thousands of people have joined the battle against EB.  And although her time on earth is through, her purpose, her legacy continues.  This fight is far from over.  Quinn's story will continue to be told and she will continue to inspire people to follow their hearts and fight for those who suffer.  

Each day, Quinn was forced to endure EB and the pain and suffering that it brought.  Despite this, Quinn would smile her amazing smile and bring tremendous joy to those around her.  Because of EB, Quinn's time here was much too short.  However, the lessons she taught us are immeasurable.  They are lessons that we must now continue to share with others.  We much love one another without judgement; we must show compassion and kindness.  We must be joyful and embrace each and every moment.  Above all, we must have faith.

Quinn, thank you for shining your light into my life and reminding me to believe & to find hope in every situation.  I love you.

I know that there are so many who have followed Quinn's story who what to get involved and help.  Many of you know that Quinn was part of clinical trial that is being done at the University of Minnesota.  This summer, there is an awesome event being hosted my the Children's Cancer Research Fund called

 Time to Fly.  There is a special team dedicated to the research being done and I am excited to be a part of that team.  If you would like to participate or support TEAM PUCK, please visit my Time To Fly Page here: Time to Fly - Christie Zink's Team Puck Page

Someday we will find a cure, and sweet Quinn...you are a part of that cure!