Chappaqua Parents on a Lifetime Mission
You may have seen Making Headway’s sign on King or you may even know that Making Headway works with kids with brain tumors, but not really understand what that means.
I was lucky enough to spend time talking with two of the founders of Making Headway and I came away enlightened and inspired. Maya and Edward Manley handled the most traumatic event of their lives–seeing their daughter through diagnosis, treatment and the aftermath of an invasive brain tumor–and turned their family’s experience into a world class foundation whose focus is care, comfort and a cure for families facing pediatric brain tumors.
Over 25 years ago, the Manley’s daughter Cynthia began exhibiting symptoms that concerned her parents. It took three years until doctors were able to diagnose a brain tumor resting on her pituitary gland. Through the surgery and long period of chemo and radiation therapy that led to Cynthia’s recovery, they were immersed in the world of brain tumor treatment and its aftermath. When Cynthia graduated HGHS and eventually Ithaca College, after two gap years in Switzerland, the Manleys, along with Clint Greenbaum, were driven to create an organization that would help provide the emotional and practical support needed by families like them.
During Cynthia’s recovery, the Manley family was lucky enough to have the full support of the Chappaqua Central School District who was able to make accommodations, send tutors to the home and provide the emotional support needed to ensure Cynthia graduated on time. The family was acutely aware that many other children did not have the advantage of a district such as ours. From this idea, the Manleys have created a foundation that provides millions of dollars in support and resources to patients and families dealing with pediatric brain tumors.
Making Headway’s goals of “care and comfort” means a team of six education advocates and 29 psychologists are available to help families work with school districts to craft and execute Individualized Education Plans for each recovering student. Mr. Manley notes that every child who experiences chemotherapy will have some sort of learning disability to address. They provide sibling help, psychological care for parents and practical support for families. They seem proudest of the play room they support at The Stephen D. Hassenfeld Children’s Center for Cancer and Blood Disorders at NYU Langone Medical Center. They have created a bright and cheerful area with arts and crafts, games and healthy snacks. Prior to Covid, Mrs. Manley volunteered at the center two days each week and strived every day to make the lives of families easier. As she says “We give them courage for the next day, the next week, the next month.” Making Headway also funds several positions at the hospital designed to help families, including a Neuro-Psychologist, a Care Coordinator, and a Clinical Trial Nurse.
The other pillar of the foundation is “cure” and the Foundation has invested over $7,000,000 in research to find better treatments and novel medications. Additionally they fund the Brain Tumor Tissue Bank at NYU Medical Center which allows researchers from all over the world to have access to tumor samples taken during each surgery.
How is Cynthia Manley Now?
She is married and lives upstate with her husband. She graduated from Ithaca with a studio art degree. Her work and ideas are woven throughout the children’s center. Mrs. Manley notes that Cynthia’s first job was at ICD Jewelry where Varda Singer treated her with patience and kindness that her parents have never forgotten.
How can you help?
The year marks Making Headway Foundation’s 25th anniversary serving children with a brain or spinal cord tumor. The need to help these children is greater than ever before, with mental health challenges that are compounded by the impact of COVID. Mrs. Manley also notes that the holidays can be particularly difficult for families dealing with an uncertain future. If you live in Chappaqua and want to learn more, feel free to stop by their office at 115 King Street. And if you want to directly help local families that have a child with a brain or spinal cord tumor, please visit MakingHeadway.org and click on donate.
Making Headway is also investing in research to help children from a psychological perspective. It is well-established that children with brain or spinal cord tumors present with a host of cognitive, academic, and socio-emotional challenges both during and after treatments are completed. Funded by Making Headway, the Hassenfeld Neuropsychology Testing Program evaluates and monitors newly diagnosed children. This is part of unique, formal protocol created at Hassenfeld (through another Making Headway grant), in which all newly diagnosed patients receive pro-active interventions, such as educational support and related services as needed.
High School students from Horace Greeley have partnered with the Gardner Marks Foundation and The Making Headway Foundation to host “One Team – One Dream”, the 3rd Annual Athlete Walkathon, to support Pediatric/Adolescent cancer research and programs that assist these children and their families.
