Making Advocates of Those Who Make Change Happen
Influencing those giving children and families a psychosocial voice
We regularly interact with members of Congress and lawmakers to develop, evolve, and build legislation to improve the psychosocial care of children with cancer.
We collaborate with associations and childhood cancer professionals who share in our mission to improve the quality of life for children with cancer and their families throughout the cancer trajectory.
We advocate for the psychosocial needs and care of families whose children are struggling with cancer.
We foster a Washington, DC based focus on legislators, lobbying for needed legislation and appropriation of funds for laws that support psychosocial care research in childhood cancer.
Partnership for Awareness
September is childhood cancer awareness month. We acknowledge all the courageous children and their families affected by this disease. Around 46 children a day are diagnosed with cancer and seven children a day die from cancer in the United States (Surveillance Epidemiology and End Results Cancer Statistics Review/ National Cancer Institute, 2012).
Mattie Miracle is honored to partner with the American Psychological Association's Division 54 - Caregiver Wellbeing Special Interest Group to launch a social media campaign about the importance of psychosocial care and the evidence-based Standards guiding this support. A special thank you to Dr. Chrissy Salley (co-chair of the special interest group), Dr. Lori Wiener (co-director of the behavioral health core, NCI), and Allie Neenan (clinical psychology doctoral student) for their efforts to make this campaign a success.
The Caregiver Wellbeing Special Interest Group understands that a child's cancer diagnosis and treatment can impact the mental and physical health of parents, which can ultimately affect the child's treatment outcomes. Our goal this month is to spread awareness that optimal cancer treatment requires a comprehensive approach that addresses both the medical and psychosocial aspects of care.
Standards Inspire Advocacy
This summer, Mattie Miracle was contacted by Alexandra (Allie) Neenan, a doctoral student at Eastern Michigan University. Allie expressed her thanks for the creation of the Psychosocial Standards of Care and discussed her interest in promoting the Standards through a social media campaign during Childhood Cancer Awareness month.
Allie designed visually appealing Instagram graphics and messages to educate the advocacy community about the 15 evidence-based Standards of Care. We are grateful for Allie's creativity, advocacy skills, and initiative to spread the message that childhood cancer is NOT just about the medicine.
Reflections from Allie Neenan, MS
I am about to enter the fifth year of my doctoral program studying Clinical Psychology at Eastern Michigan University. During this time, my research interests have largely focused on understanding how individuals impacted by childhood cancer find community and support among others going through the same thing. The Psychosocial Standards of Care, which were published while I was an undergraduate, played a major role in my decision to pursue a PhD in Psychology for the purpose of helping children with cancer.
While I had always wanted to study psychology, childhood cancer is a cause that I only became familiar with near the end of my time in college. As I approached my senior year, I knew that I wanted to find a way to combine my passion for psychology with my desire to help families affected by pediatric cancer. I remember feeling confused, even thinking, “children going through cancer don’t need therapy, they need better medicine.” I cringe when I look back on this mindset, but the truth is that many people overlook how vital psychosocial care is for children with cancer and their families.
When I learned about the Psychosocial Standards of Care, I quickly realized just how wrong I was. The Standards are unique in how thoroughly they address the needs of children with cancer and their families. These documents clearly describe the research on the psychological toll of cancer and they set the stage for why comprehensive care is so important. The Standards describe over a dozen ways that every single medical center that treats children with cancer should be working to address their psychosocial needs. The Standards helped me to understand that psychologists have the power to buffer the harm of nearly every aspect of the cancer experience - from communicating about the diagnosis, to supporting children through medical procedures, through adjusting to life in survivorship or bereavement. I went from wishing I had chosen a degree that could lead to a career helping children with cancer to realizing that the options were truly endless. Sadly, these options represent the myriad harms that children with cancer go through every day. This September, I am grateful for foundations like Mattie Miracle and the work they do to minimize the suffering caused by childhood cancer.