Every year that we have lived in Minnesota we have participated in the Time to Fly run/walk put on by the Children's Cancer Research Fund. We started out with Team PUCK (after the non profit we established in 2009). Below is the story of how we have evolved to where we are at today for Team CHUBS!
A quick back story behind PUCK: After Sarah died (read her story here), we moved to Minnesota to set up Pioneering Unique Cures for Kids (PUCK) with help from The Children's Cancer Research Funds(CCRF) - (a successful, established nonprofit). It was our way of helping and our way of keeping hope for a treatment for the disease Sarah had (Epidermolysis Bullosa). I set up PUCK and worked for 2.5 years trying to spread awareness and raise money for EB. After 2.5 years I needed some distance from it to help in my grieving process. This worked out because another set of awesome parents were in a position to take it on. Once they needed to move on the decision was made to dissolve PUCK and put our efforts with an existing EB nonprofit that was now supporting the University of MN. The cool thing is that before PUCK a lot of the EB charities didn't support the U of MN- they hesitated because it was something new and different. PUCK, with the help of CCRF kept the funding coming so the other nonprofits could see the advancements made. PUCK served it's purpose but like I said has now been dissolved. We support and rely on another nonprofit EB Research Partnership who is dedicated and has some fabulous resources. PUCK not only raised awareness but also raised hundreds of thousands of dollars to help support the doctors at the U of MN and the amazing advancements they have made for the treatment of EB- all because of support and love from people like you.
In the past our participation in the run/walk has been for Team PUCK- all the kids who suffer from EB. This year since PUCK no longer exists we are going to be at Time to Fly but under a new name. I wanted to change the name to Team Chubs (Sarah's nickname because of her chubby cheeks). The funds raised by Team Chubs will still go to EB research, (CCRF has committed to ear marking donations for the U of MN and EB research)
This year Time to Fly is going to be about Sarah. I am in the grief stage of acceptance (at least today I am : ) . Sarah has died and I will run to honor her life, memory and I want my friends to run for her too. In the past I haven't felt ready to be so bold about her death and life, but for some reason I feel like the timing works and it's something I want to do for her.
Click on Time to Fly to join Team Chubs or to donate. Thank you for your continued support on this journey of ours.
*Below are a few videos about PUCK, but I post them so you can see Sarah and get to know her a little.
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