Day One on Capitol Hill, Washington, DC
By: Melissa Wiggins
It's been a day full of presentations, meetings and pounding Capitol Hill. Tomorrow will be the same, and I LOVE IT! I have fire in my belly fighting for pediatric cancer research! So much in this world of cancer if out of my control - but this I can control (I may or may not have mentioned I'm a control freak). Progress is being made. Progress is having members of government hear the word cancer and think - "Hey, what about childhood cancer?"
People ask me "Is it worth it? Nothing will change! You're wasting your energy!" To those people I respond with this:
Pounding Capitol Hill is the like story of the barracuda and the Spanish mackerel. Scientists put them in a glass tank with a partition in the middle. The barracuda is the natural predator of the Spanish mackerel and so the barracuda tried to eat it and time after time, the barracuda kept banging its head on the partition between them. Eventually, scientists removed the partition and the barracuda had given up. It didn't ever again try to eat the Spanish mackerel. The barraduca was limited in its thinking. The difference being that CKc is not limited! Yes! Yes, sometimes being on the Hill feels like you're banging your head on the partition and nothing is changing. BUT! CKc is not limited in its thinking and so we keep banging on the partition, and we will continue to until the partition is removed and until more funding for pediatric cancer is given! Period!
A summary of our day:
We spent the morning presenting to Venable LLP's legislative, non-profit and tax divisions. Venable LLP is our representative as lobbyists here in DC! I am and remain so thankful that we are the lucky ones they chose as their non-profit of choice. I still remember the day I went to their office and said "Can you help us?" And they do! And they continue to! I can't move on without praising our Co-Founder and my husband Michael. He speaks with such passion and conviction. So many times throughout the day I looked at him in awe of his determination to fight for OUR kids and YOUR kids! Pediatric cancer is lucky to have him on its team!
Meeting with Congressman John Mica
He and I met and chatted for a good while at the airport. I gave him the book I wrote and my business card. Today, his legislative aide Chelsey called and asked me to his office. We enjoyed chatting with Chelsey who is in fact a Lake Highland graduate. Congressman Mica had read my book and said "Research is the key." Of course we agree! I invited him to our gala on April 1, 2017 and look forward to meetings at his Maitland office. I really enjoyed the energy in his office and just the big smile he had on his face both times we met. He, like us, agrees that childhood cancer treatment is barbaric and research must be funded! I think this man has a heart of gold and will do what he says and help!! The photograph here is him with Michael and me.
Meeting with Congressman Daniel Webster
Congressman Webster has been a supporter in Orlando attending Arnie's March and other local events. We spoke to Garrett Bess, his Chief of Staff. We asked him if he would support the STAR Act. His team and I are following up to make this happen! He has already supported the 21st Century Cures Act!
Meeting with Congressman Fred Upton
First off, I loved this man! Not only did he have two dogs in his office but he was kind and sweet! He is very impressive!!!
The Congressman is Chairman of the House Energy and Commerce Committee - he has juris over NIH, HHS and the FDA. The National Institute of Health and FDA are huge players in the field of pediatric cancer. He is also Chief author of the 21st Century Cures Act - a major research and medical innovation bill making its way through Congress during 2016. CKc supports this bill and has advocated for it! He is a major supporter of cancer research. We enjoyed sharing more about CKc and the lack of funding for pediatric cancer as well as talking about Michigan and the trials that we are looking to fund in that state.
Meeting with Senator Bill Nelson
We have met with his team before. Today we met with his legislative assistant Alyssa Wang. She was very knowledgeable about pediatric cancer which made my heart swell! Their offices are now looking and considering supporting the Childhood Cancer STAR Act - short for Childhood Cancer Survivorship, Treatments, Access and Research Act.
Meeting with Senator Jack Reed
Senator Reed introduced the Childhood Cancer STAR Act. The most amazing thing about that is that Senator Reed actually has a legislative assistant solely for pediatric cancer. We got to meet with Senator Reed's Chief of Staff, Neil Campbell, and Jill Brimmer, the childhood cancer legislative assistant. Neil and Jill are quite the team!!!