Exciting Clinical Trial to Treat Children with DIPG

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Earlier this year, the NYU Langone Medical Center launched a new clinical trial led by pediatric neuro-oncologist Dr. Sharon Gardner. The trial is exploring the effects of a new drug on children with a class of tumors that contain a devastating mutation, known as H3 K27M. This mutation is associated with one of the most deadly forms of pediatric brain tumors, known as DIPG (the survival rate is less than 1%).

Clinical trials, utilizing this new drug on adults with the mutation, have been underway for some time, and have shown promising results. A handful of children have already been treated with the drug under the “compassionate use” protocol, and some of them have also responded well. While no one can yet speak to the drug’s efficacy, Dr. Gardner is enthusiastic about the possibilities: “There is no cure for this kind of tumor. None. We’re hopeful that this new therapy can improve the dire prognosis for these children.”

Making Headway Awards Grants to Children with Brain Tumors

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Press Release: The Making Headway Foundation approves over $350,000 in new grants to help children with brain tumors

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.

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. To learn more, or to donate to Making Headway, visit www.MakingHeadway.org or call 914-238-8384.

NYU’s Unprecedented Disaster Response

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Here is a link to NYU’s recent “news & views” which tells the story of their call to action following Hurricane Sandy.  We thought you might be interested in reading it.

http://communications.med.nyu.edu/publications/news-views/novemberdecember-2012

 

NYU Update on re-opening

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MAKING HEADWAY FOUNDATION JUST RECEIVED THE FOLLOWING EMAIL FROM DR. GROSSMAN OF NYU:

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Dear Friends,

I am thrilled to report that we are moving forward with a phased re-opening of NYU Langone, with Tisch Hospital starting before the end of the year. Our goal of having nearly all of our main campus services back up and running by the end of January 2013 remains on track

Last week, we reached two significant milestones in our recovery efforts: the delivery of a mobile kitchen to ensure that food and nutrition services will be available for our patients, and the installation of a mobile MRI, a critical component to the re-opening of our inpatient services. Locating a unit in a short amount of time, in addition to finding a new and safe location capable of supporting the unit’s weight, was no small feat, but this puzzle became another opportunity for our faculty and staff to demonstrate the teamwork and creative thinking that has become a frequent sight at NYU Langone.

While positive progress in our patient care areas continues, the Office of Science and Research (OSR) is also expanding its efforts to help our research community. Principal investigators have a new support team of faculty advisors and staff from OSR to help them provide a clear and accurate picture to all program officers at the NIH, as well as to officials from other organizations, of the significant toll Sandy took on our research efforts and how we are quickly moving towards a full recovery.

As you can see, we have overcome many challenges over the past few weeks. And while many still lie ahead, I know the faculty and staff at NYU Langone will continue to rise to the occasion so we can get back to doing what we do best—providing world-class patient care, conducting groundbreaking research, and educating the next generation of physicians. Thank you for your continued support.

Best regards,

Robert I. Grossman, MD, Hon ’08
Saul J. Farber Dean and CEO
NYU Langone Medical Center