Congress Passes Childhood STAR Act.

After years of advocacy, Congress finally passed the Childhood Cancer Survivorship Treatment Access and Research (STAR) Act. This is one of the most comprehensive childhood cancer bills ever introduced to Congress, and will advance pediatric cancer research and address the ongoing needs of survivors. Making Headway is so proud to have been part of the successful advocacy team and are grateful to all the families who made this possible.

Just a few weeks ago, Making Headway Foundation sponsored families that we work with to be part of “Head to the Hill”, a day to advocate for brain tumor research and programs on Capitol Hill. Four Making Headway families, each impacted by a childhood brain tumor, told their story at the offices of Senators Chuck Schumer, Kirsten Gillibrand, Richard Blumenthal, and Chris Murphy, as well as eight members of the House of Representatives. Making Headway is so proud of these families, each who was able to connect with public officials in a way that even the best paid lobbyist could only dream of.

Congress approve largest U.S. research spending increase in a decade

From www.sciencemag.org

It took an extra 6 months, but Congress has finally completed its work on a spending plan for the 2018 fiscal year, which began last October. And the delay was good news for many federal science agencies.  President Donald Trump today signed into law a $1.3 trillion spending package that largely rejects deep cuts to research agencies proposed by the White House and, in many cases, provides substantial increases. When it comes to federal research spending, there are “some silly good numbers in here,” tweeted Matt Hourihan, who analyzes U.S. science spending patterns for AAAS (publisher of ScienceInsider) in Washington, D.C., when the deal was released this past Wednesday.

The increases were made possible, in large part, by an agreement reached earlier this year to raise mandatory caps on civilian and military spending that gave lawmakers an additional $300 billion to spend this year and next.

Here’s a look at some of the top line numbers for key science agencies:

  • The National Institutes of Health (NIH) in Bethesda, Maryland, receives a $3 billion, 8.3% increase to $37 billion. That is well above the increase proposed by either the House of Representatives or the Senate in their versions of the spending bills, and a blunt rejection of the 22% cut proposed by the White House. Included is an additional $414 million for Alzheimer’s disease research, for a total of $1.8 billion, and a $27 million boost, to $543 million, for clinical and translational science funding. The NIH increase is “beyond words, folks,” tweeted Benjamin Corb, director of public affairs at the American Society for Biochemistry and Molecular Biology in Rockville, Maryland.
  • The National Science Foundation in Alexandria, Virginia, would get $7.8 billion, a 3.9% or $295 million increase. The agency’s research account would grow by about 5%, to $6.3 billion. The bill notes “this strong investment in basic research reflects the Congress’ growing concern that China and other competitors are outpacing the United States in terms of research spending.” It also endorses the Senate’s call to build three new oceanographic research vessels.
  • The Department of Energy’s Office of Science in Washington, D.C., would receive $6.26 billion, an $868 million increase. That is roughly a 15% increase, rather than the 15% cut the White House proposed. Lawmakers also rejected Trump’s proposal to eliminate the Advanced Research Projects Agency-Energy, and instead gave it a $47 million boost, to $353 million.
  • A $457 million, 7.9% increase for NASA science programs, to $6.2 billion. The bill increases the agency’s planetary science program by some 21%, or $382 million, to $2.2 billion. NASA’s earth science programs remain flat at 2017 levels, but the bill rejects the proposed elimination of several earth science missions and maintains funding for the troubled Wide Field Infrared Survey Telescope. Overall, NASA gets $20.7 billion, $1.1 billion above 2017.
  • Spending at the National Oceanic and Atmospheric Administration in Silver Spring, Maryland, would grow by $234 million, to $5.9 billion overall. Funding for climate research would remain flat, but the final bill rejects cuts proposed by Trump and the House.
  • The National Institute of Standards and Technology ​in Gaithersburg, Maryland, would get $1.2 billion, $247 million above 2017 levels.
  • The U.S. Geological Survey in Reston, Virginia, gets $1.1 billion, $63 million above 2017 levels. The bill preserves the agency’s eight climate science centers; the White House had proposed cutting that number in half.
  • Research programs at the U.S. Department of Agriculture in Washington, D.C., would grow by $33 million, to $1.2 billion.
  • The budget of the Environmental Protection Agency ​in Washington, D.C., remains flat at $8.1 billion, as lawmakers rejected deep proposed cuts.

Pediatric Low-Grade Gliomas Research Study Published

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.

Why clinical trials are so important

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?

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/.

Research Highlight: Cutting Edge Program funded by Making Headway

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

Photo by Catherine LeponePress Release
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

CHOP

Photo borrowed from Children’s Hospital of Philadelphia website.

From our good friends at Kids V. Cancer…  This is an excellent way to ensure more funding for pediatric cancer research.

Reauthorization of the Creating Hope Act Passes in the House

July 11, 2015

Dear friends,

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.

Innovation and Funding 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?

Survival and Inspiration

John Mordach

Photo is copied from the article in the Chicago Tribune.

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