When a child is diagnosed with a brain or spinal cord tumor, the future is uncertain; families struggle with anxiety and fear. A strong medical team can help the family take its first crucial steps forward. But reconstructing a life and nurturing a family devastated by the emotional and physical demands of treatment and its aftermath go beyond what a medical environment can provide. The whole family needs a special kind of care and support.
How It Began
Making Headway Foundation was established in 1996 by a small group of parents—Maya and Edward Manley and Clint Greenbaum—whose own children had undergone treatment for brain tumors. They found that traditional hospital-based medical programs failed to provide essential humanistic services that enabled a child to reintegrate physically and emotionally with his or her family, school and peer groups. The founders of Making Headway wished to provide other families with what they had found wanting—even with the finest medical care. Thus began a close collaboration with the Hyman-Newman Institute for Neurology and Neurosurgery (INN) at Beth Israel Medical Center in New York City. From the start, Making Headway was conceived as having three main components:
Support at the Hospital. With the help of a pediatric neurosurgeon, the late Dr. Fred Epstein, and pediatric neuro-oncologist, Dr. Jeffrey Allen, Making Headway began providing a child- and family-friendly environment for children diagnosed with brain and spinal cord tumors. Families coming to the INN were greeted with music, clowns, healthy snacks and fun activities developed by trained, professional therapists. Ongoing Care. At the same time, Making Headway established its Ongoing Care Program, so that families leaving the hospital had access to support groups, counseling, educational consulting, periodic bereavement groups and more. Research and Cure. The founders of Making Headway Foundation felt strongly that part of their mission should focus not only on the care and comfort of children with brain and spinal cord tumors, but on research toward their cure. In 1999, they began funding medical research and training fellowships in the challenging field of pediatric neuro-oncology, an area that receives limited support from other sources. They also began funding professional education and parent seminars. More recently, Making Headway has begun to fund medical research projects.In 2004, Dr. Allen and his Pediatric Neuro-Oncology Program team found a new home at the New York University (NYU) Medical Center. Making Headway Foundation now works closely with this hospital and its Stephen D. Hassenfeld Children's Center for Cancer and Blood Disorders.
Making Headway Today
What began as a small cluster of parents helping parents has expanded to include increasing numbers of friends, families, contributors and survivors who consider themselves part of the Making Headway family. Their dedication enables Making Headway to increase, expand and enhance quality-of-life services at the hospital, to reach more families in the community and to envision and more fully realize Making Headway's role in the care, comfort and cure of children diagnosed with a brain or spinal cord tumor.
Today, children, siblings, parents and doctors rely on Making Headway to counter fear and discomfort with laughter and love; to replace confusion and bewilderment with understanding; and to make headway through each impasse to a place where the joy of being a child and the joy of being a parent are nurtured and shared.