Pediatric Low-Grade Gliomas Research Study Published

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Making Headway funds a variety of research studies to help identify better treatments and a cure for pediatric brain or spinal cord tumors. Several years ago, Making Headway helped fund a project led by Dr. Uri Tabori, at the Hospital for Sick Children in Toronto. This study seeks to understand the implications of a specific gene, BRAF V600E, in Pediatric Low-Grade Gliomas.  Although the paper is quite technical, it showcases both the tremendous complexity of understanding pediatric brain tumors and the significant advancements that researchers are making.  Making Headway is proud to help move this science forward by funding innovative and practical research projects.  You can download a copy of the report at https://makingheadway.org/published.  You can support future projects, by donating to Making Headway.

Why clinical trials are so important

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The treatment options for pediatric brain tumors are very limited. New options are desperately needed to improve survival rates and quality of life. Before a new treatment can be approved it must go through a large number of tests and analysis. Clinical Trials are a critical step in which the new treatment option is tested on patients. Making Headway understands the critical role that clinical trials play in new discoveries, and currently funds a Research Manager to organize and manage these trials at the Stephen D. Hassenfeld Children’s Center for Cancer and Blood Disorders. This past year, the Clinical Research Manager oversaw 35 active research projects that are devoted specifically 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.

Fast Facts – What is a pediatric CNS tumor?

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Together, the brain and spinal cord make up the central nervous system (CNS). A childhood CNS tumor is a disease in which abnormal cells form in the tissues of the brain or spinal cord. There are dozens of different childhood brain tumor types and classifications, each based upon a tumor’s cell structure, composition, rate of growth and other characteristics.  Learn more at https://makingheadway.org/facts/.

Making Headway – Patient Story (Molly)

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Molly was a bright young elementary school student who excelled academically and was well-liked by her teachers and other students. One day she began feeling very sick and her family rushed her to the doctor. Molly had a brain tumor and required complex neurosurgery. She survived and recovered after several rounds of chemotherapy and radiation.  Unfortunately, the tumor and the radiation had permanent side-effects that impacted her speech, hearing and cognitive abilities. Molly’s school was not equipped with the programs and services for children with these types of special health care needs. The family was referred to one of Making Headway’s expert Educational Specialist.

Over the next decade, Making Headway worked with the family, teachers, and school administration to ensure that Molly received all the complex services, accommodations and equipment she needed. In Molly’s case, this included a 1-on-1 health paraprofessional; hearing and vision education services; physical, occupational, and language therapies; and transportation. Molly recently earned her high school Regents diploma and is now looking forward to college.  With help from Making Headway, Molly was placed in the right environment and given the tools she needed to succeed.  For more stories visit, https://makingheadway.org/children/.

Note: For confidentiality reasons, the name of the patient has been changed.

Program Highlight – Playroom Improvements

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A hospital can be a scary place for a child, especially for pediatric cancer patients. Recent studies have proven what Making Headway has known for decades: the hospital’s physical environment affects the patients’ experiences, emotional needs, and health outcomes.  Every child at the Hassenfeld Children’s Center is able to benefit from the enhanced playroom and activities supported by Making Headway. Through our programs, Making Headway has transformed the halls and the playroom into a fun, healthy place for children and families. On any given day, children of all ages and backgrounds can be found happily absorbed in arts and crafts activities, games, or munching on healthy, delicious snacks. Professional entertainers and child therapists are also part of the playroom team, helping the whole family feel comfortable, relaxed and welcome.

5th Annual Brian McCabe Drive for a Cure Golf Outing

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There is the rare day that you can enjoy a guilt-free day off from work to go golfing. That’s because you could be part of the 5th Annual Brian McCabe Drive for a Cure Golf Outing, which raises money to support children with brain cancer. Enjoy a beautiful afternoon out on the links for a great cause. September 25th, 2017, Split Rock and Pelham Bay Gold Courses. It’s not too late to sign up, just visit https://makingheadway.org/mccabe/.

Research Highlight: Cutting Edge Program funded by Making Headway

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Dr. Daniel Reinberg is one of the most respected and accomplished medical investigators in the country and Making Headway has agreed to fund his latest research project. This unique research project focuses on a devastating type of pediatric brain tumor known as Diffuse Intrinsic Pontine Gliomas (DIPGs). Despite recent advances in diagnosis and treatment, the majority of children diagnosed with DIPG die within 24 months of diagnosis. Through a grant by Making Headway, Dr. Reinberg and his team are studying specific  compounds that block the ability of certain proteins that bind to a specific epigenetic signature, known as dimethylation of histone H3 on lysine residue 36 (H3K36me2). It’s a lot more complicated than that, but in the end, these compounds are very promising therapeutics for the treatment of this deadly childhood malignancy.   Learn more at https://makingheadway.org/research.