Chappaqua, NY — The mission of the Making Headway Foundation is provide care and comfort for children with brain and spinal cord tumors while funding medical research geared to better treatments and a cure. Over the past 20 years, Making Headway has invested over $20 million in research and services to these children and their families. In January 2017, Making Headway continued this incredibly valuable work by approving over $350,000 in new grants to The Stephen D. Hassenfeld Children’s Center for Cancer and Blood Disorders at the NYU Langone Medical Center. These grants will fund a variety of programs that address both the short-term and long-term needs of children with brain or spinal cord tumors.
Today, there are more than 28,000 children living with a brain or spinal cord tumor, commonly referred to as a Central Nervous System (CNS) tumor. Over 2,500 children (seven every day) are diagnosed every year. In 2016, pediatric CNS tumors caused more deaths than any other type of pediatric cancer. Making Headway is committed to helping these children by providing Care, Comfort, and a Cure.
In order to have the most significant impact Making Headway focuses on holistic approaches to research and services. With this in mind, it approved funding for four significant, but very different research grants. For example, one grant will fund the NYU Center for Biospecimen Research & Development, which catalogs and stores thousands of invaluable medical samples from children with brain or spinal cord tumors. Doctors from around the world can request and receive samples for their research, at no cost. Making Headway is trying to encourage more research and collaboration, with an expectation of practical improvements related to the treatment and prevention of pediatric brain and spinal cord tumors. This grant is complimented by another that supports a Clinical Trials Manager. Clinical trials are important research studies that explore whether a medical strategy, treatment, or device is safe and effective for humans. The Clinical Trials Manager will oversee 35 active research projects that are devoted to pediatric brain or spinal cord tumors. Each trial has the potential to discover a new treatment or possibly a cure for these pediatric tumors.
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.
Making Headway understands that in order for children to receive the highest quality medical services, there must be specifically trained doctors who understand the unique technical needs of pediatric brain and spinal cord tumor patients. Making Headway has been helping to meet this need through an annual grant to support a pediatric neuro-oncology fellowship at NYU Langone Medical Center. Chosen from among the best candidates in the country, these fellows evaluate and treat a broad range of brain or spinal cord tumors in children, manage neurological complications of systemic cancer in children, participate in the conduct of clinical trials and prepare for an academic leadership career in pediatric neuro-oncology. Now in its 6th year, this program has been very successful, as each fellow has moved forward with a robust career in pediatric neuro-oncology.
Making Headway was created 20 years ago by a few families who had a child diagnosed with a brain or spinal cord tumor. Since that time, this Westchester-based non-profit organization has been dedicated to helping other children and their families. Its investments in medical research and training have been critically important, leading to new breakthroughs and training the next generation of pediatric neuro-oncologists. Beyond research, it provides a true continuum of services in order to help families impacted by pediatric brain or spinal cord tumors. Its ongoing programs include educational and psychological counseling, fun family events, a scholarship fund, and a variety of in-hospital care services.
To learn more, or to donate to Making Headway, visit www.MakingHeadway.org or call 914-238-8384.
