Action Days for a Childhood Cancer Survivor
On April 23, the Northern Nevada Children’s Cancer Foundation (NNCCF) represented the state of Nevada on Capitol Hill in support of the STAR Act. NNCCF childhood cancer survivor, Johnny Hartman, lead the team and shared his story with legislators. In 2016, Johnny was diagnosed with Stage IV non-Hodgkin lymphoma and completed treatment in May of 2017. We asked him about his trip and how advocating for childhood cancer inspired him.
Q: How was training and the whole run-down on day one?
A: I thoroughly enjoyed training day. The informational sessions made me incredibly excited as I learned how extensive this bill is and how it will be beneficial to so many children and their families. Learning of the new, less-toxic treatment plans researchers are trying to perfect for all pediatric cancers made me excited for the future of immunotherapy and the extinction of chemotherapy.
Q: What was the experience like, meeting legislators on the Hill on day two?
A: The training day was fun, but meeting the legislators was something I will take with me for the rest of my life. First off, it was an honor being given the opportunity to be the voice of pediatric cancer patients across Northern Nevada, but it was profound to also express the importance of the STAR Act by letting our representatives know how essential this bill is for so many families.
Q: Who did you meet with on Capitol Hill?
A: I met with Senator Dean Heller and Senator Catherine Cortez-Masto along with their staffers. I also had the chance to meet staffers from the offices of Representative Mark Amodei and Representative Dina Titus.
Q: Who did you meet from other childhood cancer organizations and what inspiring things did you hear?
A: The training day session was not only a time for soaking up all the information of the STAR Act but also a networking opportunity. I met with other advocates from other states and got to hear of some incredibly empowering stories of other survivors as well as parents of children who have fought, fighting, or are just beginning their cancer journey. Listening to the stories of relapse, children battling cancer even before starting kindergarten, and discovering similarities of common chemotherapy drugs during each other’s treatments all made for profound connections.
Q: How was your experience seeing Capitol Hill and Washington D.C. as a whole?
A: As a person who lives to travel, it was also another gift being able to travel to the most important city in the United States. The history, architecture, and culture of Washington, D.C. is so polarizing to that of the west coast. It was fun being immersed in a society that is a little out of my comfort zone.
Q: What was the most empowering part of the trip?
A: Ultimately, overall, being part of something that could potentially change the future of cancer care was easily the most empowering aspect of the trip.