When we told you CKc was growing, we meant quickly! And Team CKc, new staff as well as dedicated volunteers, didn’t let any grass grow under their feet. If cancer doesn’t rest, neither will we!
CKc on the road to DC
First stop: Education on Capitol Hill (go big or go home, right?)
An integral part of CKc’s mission is to educate for change, and that includes Congress! Team CKc met with Greg Gill at the Venable LLP office, our pro bono lobbying firm, to strategize advocacy for this year. We also met with 11 congressional offices, including six in the senate, and five in the house. The highlight of this trip was that we were able to meet with DC-based staff from every one of our local representatives, including Senators Marco Rubio and Rick Scott, and Representative Val Demings. This also included personally meeting Representative Stephanie Murphy, who’s district houses the CKc office.
All of these offices have pledged their support to help us further some legislation regarding the deadliest cancers, which Team CKc will now continue working on from Orlando.
Next stop: Research at Children’s National Hospital
Team CKc met with four researchers at Children’s National Hospital to learn about their current and future research projects. Two researchers specialized in brain tumors, one solid tumors and one in genomics. CKc carefully vets potential grantees and invites only the most innovative to apply! The group discussed possible grant funding and the CKc grants application process. We are excited about the possibilities at Children’s National Hospital!
Last stop: Collaboration with OpenWater, Arlington, VA
Speaking of the grants process, Team CKc met with staff from OpenWater, the company providing CKc’s new grant application and management software. This software was put into effect in January to help streamline and automate the application, review, and follow-up processes for all research grants. The next step in the growth of CKc, this software ensures we can continue to be good stewards of the investment our donors make in the fight to cure childhood cancers.
Are you exhausted yet? Grab some coffee… we’re just getting started!
Every photo has a story… This one is pretty unique and beautiful and sad and so powerful wrapped into one.
On April 1, 2017, Nolan King died unexpectedly after surgery. Nolan was 3. Nolan is a hepatoblastoma cancer warrior! A true real life hero! Nolan’s parents are photographed above with me and Dr. Elizebeth Beierle of UAB, a CKc funded researcher.
Now let’s backtrack to 2016 when I met the King Family! I met Nolan at Arnold Palmer Children’s Hospital – my Cannonball was having scans and Nolan was being pulled in his wagon by his Dad Tony, he was in chemotherapy treatment and was so sick, BUT what a beautiful smile he had.
The last time I saw Nolan he and I played soccer with Richard Johnson our creative director at CKc. We laughed and played and I will forever remember Nolan that way!!!! He is my little soccer star!
When Nolan relapsed Kelly his Mum called me and she said four words I will never ever forget!
“He CAN’T die Melissa”
I promised Kelly he wouldn’t and that we would find a clinical trial together for relapsed hepatoblastoma and I would reach out to every researcher I knew and get Nolan what he needed. I believed that! That had been my experience with every Mum prior to Kelly! This time would be no different…I thought!
It is painful to write these words… I failed! I couldn’t find anything… no trials for Nolan.
On April 1 the night of CKc Gold Gala in Orlando my husband and co-founder Michael Wiggins with permission announced that CKc would fund a clinical trial for hepatoblastoma in Nolan King’s honor.
Today we got to show the King Family what funding has done in basic research so that we may fund a trial.
Personally, I made it my mission to keep our promise! Literally, hundreds of hours to get to this photograph and I would do it all over again for that little man I played soccer with just two years ago.
I couldn’t keep my promise to Kelly but I can to Nolan and his two little brothers whom I love, Carson and Spencer! I promise that someday kids won’t die of hepatoblastoma! That someday soon there will be options for kids like Nolan!
CKc co-founder Melissa Wiggins and pediatric cancer advocate Monica Angel were in Tampa, Florida, recently for a #nomoreoptions event. Approximately 50 people attended the small group gathering which focuses on educating others on why advances need to be made in the field of pediatric cancer treatment to not only create more survivors, but to also increase the quality of life for those children. The event also highlighted a CKc-funded trial that involves an innovative way of administering chemotherapy to a child under three years old. The trial is named after Monica’s daughter, Emmi-Grace.
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