On Sunday, September 22, Mattie Miracle participated at Curefest on the National Mall. September is Childhood Cancer Awareness Month. In honor of this, the childhood cancer community unites as one voice against childhood cancer. Families impacted by childhood cancer gather and walk three miles around the US Capitol and the Washington Monument, network with each other, and raise awareness for the number one killer of children by disease in our country.
For six years, Mattie Miracle has participated at this national awareness event with 80 other childhood non-profits from around the country. At the event, we have our own tent which provides information about the Foundation and about the importance of psychosocial care, as well as a lot of fun take-aways for children and teens. We are honored each year that families come to visit us and share their powerful psychosocial stories with us. As their stories continue to validate our mission that CHILDHOOD CANCER IS NOT JUST ABOUT THE MEDICINETM.
One of the themes we heard from most parents this year was that their child, who survived treatment, is now having many emotional and social issues that are impacting the family and the school. We could hear the exasperation and exhaustion in the voices of moms and dads, who are desperate to find help and community resources. Resources that understand the psychosocial issues that arise from cancer treatment. Mattie Miracle understands that the psychosocial issues do not end for the child or the family once the medical treatment does, which is why we had the vision to create evidence based Psychosocial Standards of Care. As Standard #3 focuses on the importance of having access to Psychosocial Follow-Up in Survivorship. Our hope is that with implementation of the Standards, that this terrible void experienced by the cancer community can be effectively addressed. Not just addressed with one child and family, but with EVERY child and family touched by cancer.
Mattie Miracle is also particularly grateful to Lynda. Lynda lives in upstate New York and her son, Charlie, died from DIPG (a brain cancer). In 2016, we first met Lynda and Charlie at Curefest. Charlie entered our tent to learn more about the Psychosocial Standards of Care. Charlie was a teenager in treatment and felt his hospital wasn't meeting his needs or that of his fellow patients. So literally he took our Standards brochure back to his institution and told them.... 'here is the scientific evidence, NOW do something to help support me and the other kids.'
Each year, Lynda comes to visit our Foundation tent to give us an update. This year she let us know that the hospital Charlie was treated at listened to him and his request. There is now a psychosocial program devoted to helping families throughout the cancer journey. Lynda thanks Mattie Miracle and ultimately Mattie for the Standards, and we of course thank her and Charlie. The Foundation can have the vision to create the Standards, but it was Charlie who advocated for the implementation of the Standards at his hospital. A beautiful story that speaks to the power of advocacy and how one voice can great a legacy to improve the overall quality of care for children with cancer.