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 http://makingheadway.org/published. You can support future projects, by donating to Making Headway.
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.
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 http://makingheadway.org/facts/.
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 http://makingheadway.org/research.
Making Headway Foundation Awards Research Grants
Chappaqua, NY based foundation funds more than $300,000 in grants for pediatric brain and spinal cord tumor research.
Chappaqua, NY – December 1, 2015: The Board of Directors of Making Headway Foundation recently voted to award more than $300,000 in grants to researchers studying pediatric neuro-oncology.
NYU Langone Medical Center received four grants. The total amount awarded was $251,242. These grants cover neuro psychology screening and assessment for patients; a clinical trials manager; a pediatric neuro-oncology fellowship for Dr. Devorah Segal; and a human brain tissue bio repository for the purpose of obtaining and archiving tissue samples from pediatric brain tumor patients. These samples will be made available to researchers within NYU and to other institutions at no or nominal cost.
Additional grants were made to Columbia University of New York City and The Hospital for Sick Children in Toronto Canada for $30,000 and $25,000, respectively. The Columbia University grant will be to study the long term cognitive & family aspects of recovery from a pediatric brain tumor and will be conducted by Dr. Stephen Sands, Associate Professor of Clinical Psychology.
The Hospital for Sick Children in Toronto, Canada will study the molecular make up of low grade gliomas in children in order to improve clinical decision making. The goal is to enable less toxic therapies for good prognosis patients and improved targeted therapies for children with poor expected outcomes. Drs. Uri Tabori and Cynthia Hawkins will spearhead this project. Making Headway Foundation is partnering with A Kids’ Brain Tumor Cure (PLGA Foundation) on the funding for this study.
“For many years Making Headway has been dedicated to the care of children with brain or spinal cord tumors and their families. Finding better treatments and a cure has always been part of our mission and, with these grants, we take another step forward in that most important aspect of our work,” said Edward Manley, Founder and Board Chair. The Board’s Vice President of Research Sam Schwartz added, “The Board and its Medical Advisors are proud to announce the award of these grants to deserving programs in pediatric neuro-oncology.”
Making Headway Foundation is now in its 20th year. Founded by Edward and Maya Manley of Chappaqua, NY and Clint Greenbaum of Westhampton Beach, NY, its mission is to provide care and comfort for children with brain and spinal cord tumors while funding medical research geared toward better treatments and a cure. The Founders each had a child who survived a pediatric brain tumor.
Reauthorization of the Creating Hope Act Passes in the House
July 11, 2015
Great news. Yesterday, the House of Representatives voted to reauthorize the Creating Hope Act when the House passed the 21st Century Cures Act, H.R. 6.
We want to thank Chairman Upton, Congresswoman DeGette and their colleagues for their leadership on 21st Century Cures. 21st Century Cures Act will also increase funding for medical research and innovation at the NIH and FDA, strengthen compassionate use with the Andrea Sloan Compassionate Use Reform and Enhancement (CURE) Act, support the National Pediatric Research Network Act and further rare disease drug development in the OPEN Act.
We want to extend a very special expression of appreciation to Congressman Butterfield, Congressman McCaul, and their staff, Saul Fernandez and Andy Taylor, respectively for their leadership in the Creating Hope Act reauthorization. This victory is theirs.
The Creating Hope Act has wildly exceeded expectations in providing incentives for companies to develop drugs for kids with cancer and other life threatening illnesses. Sanofi recently purchased a Creating Hope Act priority review voucher for $245 million and three new drugs for seriously ill kids have come to market, including Unituxin by United Therapeutics for a pediatric cancer.
We look forward to working with the Senate on the reauthorization of the Creating Hope Act and on the Kids Innovative Drugs Initiative which is designed to increase access to drugs for pediatric cancer research. In that regard, we also look forward to engaging pediatric oncologists to help them access drugs for their own preclinical and clinical research.
It takes many different approaches to raise the funds necessary to cure pediatric brain cancer. The state of Missouri created a Pediatric Cancer Research Trust Fund under the newly enacted Sahara’s Law. It had an excellent first year.
Read how they did it here. http://www.semissourian.com/story/2164379.html
Maybe New York could be next?
We always want to hear inspiring stories from those who survive brain cancer. Children with brain and spinal cord tumors are so resilient, brave and strong. Sometimes, in the throes of treatment, it’s hard to remember that there is going to be a light at the end of the tunnel for most patients. Here is a phenomenal story from the Chicago Tribune about one young man’s story.
CLICK HERE FOR THE FULL STORY http://www.chicagotribune.com/sports/college/ct-uic-swimmer-brain-tumor-spt-0215-20150214-column.html#page=1
I was visiting with a young brain cancer patient at the hospital the other day. A candy basket was passed around the Play Room where she was waiting to see the doctor. We were doing a craft project together.
She looked in the candy basket and spotted a mini Nestle Crunch bar. “Oh, boy! Those are my favorite!”, she exclaimed. I said, “I love those too.” She asked if I wanted one. I said, “I don’t know. It’s candy and I have lunch soon. Maybe I shouldn’t.” (Also thinking of the calories…) That seemed silly in the face of the sickness so evident in this young girl. So I said, “Should I?” She replied, without hesitation, “You only live once, Catherine.” Wow! Maybe that’s a lesson we can all learn…to live in the moment. Enjoy life as it is. Find the little joys wherever you find them.
I thank her for inspiring me to count my blessings.
Catherine Lepone, Executive Director, Making Headway Foundation
With a new year always comes new resolve and dedication. 2015 is no different. There are too many children that we lose around the holidays from the evil thing known as brain cancer. And yet, we are full of hope as we receive applications for research grants, reports of successes with new treatments and news of all of the hopeful futures that our children enjoy since they have beaten their own form of pediatric brain cancer.
So Making Headway Foundation starts the new year with renewed commitment to help and fight for better treatments and cures. In the meantime, we want to make life better for all of those who have been touched by childhood cancers. We look forward to having your support as we do our work…not work, really. It’s a mission that we embrace with love and affection for all of those who cross our paths and enrich our lives by their courage.
In memory of our friend, Peter H.
The Making Headway Foundation is a 501c3 non-profit organization that supports families of children diagnosed with brain or spinal cord tumors. Over the past 20 years, we have helped thousands of families through unimaginably difficult times, providing a wide range of holistic programs and services. EIN # 13-3906297.
Making Headway Foundation, Inc.
115 King Street
Chappaqua, NY 10514-3460
Telephone: (914) 238-8384
Fax: (914) 238-1693