
CureSearch hosted an unbelievable 2 day advocacy event in Washington, D.C. this past week and it was a huge learning experience for me.
Here are some highlights:
- I met with over 8 congressman and senators staff and in some situations the member themselves. It was incredible to me how open these offices are. Many people call their congressman or senator but don’t realize you can actually set an appointment and go sit in their office. I stayed positive even though I find myself deeply entrenched in politics and don’t prefer most of these elected politicians. I went there for one purpose only and that was for the kids who have suffered from cancer. It’s not fair and if there is anything I can do to justify their battle and share their story I’ll do it.
- It was my second event wearing Amanda’s and Donavan’s faces and their stories were told many times to very powerful people.
- I also realized that the members of the House have offices on one side of the capitol and the Senate has their offices on the opposite side. Which isn’t that much a of a challenge considering I had 30 minutes to get over there in between meetings however that doesn’t take into consideration the President’s motorcade blocked off the entire capitol grounds and forced me to wait 15 minutes to get “cleared” by security forces surrounding the buildings.
- During CureSearch’s training day I realized a few important facts about the search for a cure for Childhood Cancer. First of all, there has only been 1 drug approved by the FDA for Childhood Cancer in over 20 years. In addition to this, these amazing kids are being treated with chemotherapy and drugs that were invented 40-50 years ago. The toxicity of these treatments is what causes most of them to loose their battle. I refuse to believe this is the best we can do.
- I also realized (and this is something that made me really irritated) that the NCI (National Cancer Institute) gives less than 4% of funding to Childhood Cancer diseases. That means that 4% has to be split between over 13 forms of Childhood Cancer, all of which have their own makeup and treatment protocols (some of which are hardly studied at all). This is ridiculous to me considering that other cancers receive much higher funding dollars for ONE area of the body affected. I also got somewhat reliable information claiming that the Peer Review Board for clinical trials does not have ONE Pediatric Oncologist. So you can imagine the impacts this has on our children. The NCI does not prioritize Childhood Cancer research higher because it only impacts a small percentage of the population. However, when you see these kids suffering you quickly see how their lives are worth saving. But that’s me, and I am incredibly biased.
- I met a great group of people who make a huge impact in the Childhood Cancer cause. I was humbled at all the parents I met and a very special girl who I got to attend a meeting with. A young, charming, and fun girl who is free of cancer finally!
Overall this was a huge learning experience and a ton of knowledge for me to take back to my pursuits. I will continue this fight and find a way to make a long-term global impact. For now, I am thankful for what these two days created.