By Dawn Greenberg
You may have seen Making Headway’s sign on King Street or noticed their Sparkle for a Cause fundraisers or the wonderful turnout they had for the recent HGHS walk-a-thon. 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 three education consultants and three 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. Mrs. Manley is at the center two days each week and strives 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.” There is even a massage therapist on staff who is a former chaplain. Mr. Manley notes the restorative and cathartic value she provides. Additionally a yoga teacher works with the children and their siblings to calm their minds and bodies.
The other pillar of the foundation is “cure” and the Foundation has recently committed to a $1 million grant to create a new neuro oncology laboratory at NYU Langone Medical Center. Additionally they fund the Brain Tumor Tissue Bank at NYU 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? Attend the Thursday, December 11th benefit at ICD Jewelry or donate restaurant gift cards for patient families at the Chappaqua Cares drop off location at Houlihan Lawrence (through Christmas) or visit www.makingheadway.org. Mrs. Manley notes that the holidays can be particularly difficult for families dealing with an uncertain future. Chappaqua Cares hopes to be able to do more work for Making Headway and plans to visit the Hassenfeld Children’s Center at NYU, to see the Foundation’s work first hand, soon.
If you are able to join us on Thursday night at ICD, please say hello to Maya and Edward Manley — two amazing parents who have given so much. Catherine Lepone, the foundation’s executive director will be on hand to answer questions.