Advocate, Caregiver, and NCCS CPAT Member
I am the mother and caregiver for my son who was diagnosed with biphenotypic leukemia in March of 2011. Being there for my son gave me a first hand look at what cancer survivors go through. I think most of us have been touched by cancer in some form. We might have experienced it with a family member, friend, co-worker or even ourselves. My experience left me knowing that I could no longer be passive while cancer was active in my son’s life and others. I knew I had to jump in the ring and fight back, but I was unclear how.
Attending the NCCS Cancer Policy and Advocacy Team (CPAT) Symposium in June of 2016 was a game changer for me. It allowed me to focus and gave me direction. As we prepared for Hill Day, I thought I would be nervous or intimidated. To the contrary, hearing the stories of survivors and other advocates ignited me. On Hill Day I met with my representatives’ staffers to urge them to support the Planning Actively for Cancer Treatment (PACT) Act. NCCS staff said they could feel my passion as I shared my personal story to illustrate the critical need to improve care coordination and care planning.
From this point on I knew that I must advocate for improved quality of life for cancer survivors. Since then, I became a member of the University of Alabama Birmingham (UAB) Medicine’s Patient and Family Advisory Council and UAB Medicine’s Speakers Bureau. I also attended the American Association of Cancer Researchers’ (AACR) Disparities Conference and did a poster presentation.
I am so thankful that I attended the CPAT Symposium. It changed my life.