ACS CAN staff, volunteers, childhood cancer patients, survivors and their parents joined forces with the Alliance for Childhood Cancer (Alliance) advocates last month for the Alliance’s seventh annual Legislative Action Day on Capitol Hill in Washington D.C.
Guest Post: Childhood Cancer Awareness Month
Each September, we mark Childhood Cancer Awareness Month to raise awareness about pediatric cancer and ways we can work together to find the answers that will benefit every child with cancer and their family. This month, I’ve asked Allison Johnson, Deputy Ambassador Constituent Team (ACT) Lead representing Missouri’s 2nd congressional district, to share her experience as a childhood cancer survivor and advocate for the childhood cancer community in a guest blog.
In September 2013, I was diagnosed with a form of bone cancer called Ewing sarcoma at age 19. While in college at the University of Missouri, I became involved with the university’s Relay For Life chapter, serving as the steering committee’s advocacy chair. I was introduced to ACS CAN and quickly learned about the importance of ACS CAN and the work its staff and volunteers do to raise the profile of issues effecting cancer patients, survivors and caregivers across the country. As an ACS CAN volunteer and ACT Lead representing Missouri, I’m honored to be a voice for the childhood cancer community when meeting with my Members of Congress.
Several times a year, I meet with Congresswoman Ann Wagner and Sens. Roy Blunt and Claire McCaskill to discuss how legislation pending in Congress can make a huge difference for children with cancer, survivors and their families. During our meetings, I share my cancer story and the personal stories from people in my community. It is my hope that these stories show the far reach of pediatric cancer and how the disease is affecting thousands of lives in Missouri and across our country.
Due to the uniqueness of each childhood cancer diagnosis, these diseases often receive less funding than other types of cancer. I believe cancer patient success stories are no accident. They are a direct result of research funding, access to quality care and treatment by specialized physicians and nurses. That’s why funding for childhood cancer is extremely important to me. It is not lost upon me that the chemotherapy treatments I received at age 19 may not have been available or as effective had I been diagnosed at a younger age.
For me, Childhood Cancer Awareness Month is a time when I can celebrate and remember the start of my life-changing experience as a childhood cancer patient and now survivor. I use this month to reflect on the personal growth I have experienced, as well as the growth of the “team” that fights this disease with me.
This September, join me in marking Childhood Cancer Awareness Month and honoring the more than 16,000 young children who will hear the words “you have cancer” this year. Let September be our “rally month” to spread hope in the childhood cancer community and encourage people to become involved with ACS, ACS CAN and other childhood cancer organizations that are dedicated to advocating on behalf of childhood cancer patients and survivors.