DIPG Blog, News, and Articles

Translating Clinical Trials

This article originally appeared on thecurestartsnow.org Keith Desserich, Chairman of the Board at The Cure Starts Now, explains clinical trials – what they mean for cancer patients and how they work. Clinical trials are set up in phases, all designed to focus on an idea. We call these preclinical, or even translational research trials. They are designed to conduct testing on cancer cells in a test tube or mouse modeling.  Ultimately you are trying to determine whether or not this idea, th…

DIPG Re-irradiation Side Effects and Considerations

The Cure Starts Now sat down with Dr. Luke Pater, Associate Professor of Radiation Oncology at the University of Cincinnati Department of Radiation Oncology and Cincinnati Children’s Hospital, to discuss re-irradiation in terms of DIPG, DMG and medulloblastoma. Recently families facing progression of DIPG, DMG and Medulloblastoma have received recommendations to consider re-irradiation, can you explain what this involves? Re-irradiation for brain tumors is very similar to the initial experie…

Dr. Han Shen Discusses Overall Progress on his DIPG Research

This article originally appeared on thecurestartsnow.org Dr. Han Shen, Westmead Institute for Medical Research, AustraliaFunded Project: Targeting hypoxia and mitochondrial metabolism with repurposing drugs as an approach of radiosensitization for diffuse intrinsic pontine gliomasFunded Amount: $100,000 Dr. Shen provides an update on his recent project with the DIPG Collaborative and The Cure Starts Now and explains how it is providing clues to new treatment options for diffuse instrinsic…

DIPG Patient Database with the International DIPG/DMG Registry

Data by itself offers us no clues to beating cancer. Even as a result of diligent collection from a research trial it offers little more than a confirmation of hypothesis. But what happens when data gets together? What happens when you collect data organically, across platforms and at the source? There you can detect patterns, form new theories and even cure cancer. It’s not a novel idea to collect data. For hundreds of years researchers fighting every known disease have assembled facts collect…

What is the Difference Between DIPG and DMG and what is the H3K27 Histone Mutation?

DIPG (Diffuse Intrinsic Pontine Glioma) and DMG (Diffuse Midline Glioma) are often categorized together but can have different treatments that can lead to slightly different prognosis paths. Still, much of the science, the research, foundational funding and data for both types of brain tumors are grouped under DIPG, mainly because historically much of the work researching DIPG since around 2012 led to the reclassification and current definitions of DMG. DIPG is a type of brain tumor found in an…

Making Memories After Diagnosis

Dealing with any brain cancer is never easy.  Often times it can be a battle between the clinical nature of treatments and quality of life as families struggle to adapt to the new norm.  As part of this struggle, it is customary to focus on making memories, whether facing a terminal diagnosis or not.  Even beyond creating memories, often these simple actions can provide an outlet both for children and parents that can take them “beyond the cancer” and even provide therapeutic or emotional stabil…

Communication: When a DIPG Child Can No Longer Speak

Content used with permission from the American Childhood Cancer Organization. Hoffman, Ruth, editor. Understanding The Journey: A Parent’s Guide to DIPG. American Childhood Cancer Organization, 2012. Print.Contributing Authors: David Brownstone, MSW, RSW, Caelyn Kaise, MHSc, SLP(C), Reg.CASLPO, Ceilidh Eaton Russell, CCLS, MSc (candidate) Supporting a child or teenager who has a brain tumor is an incredibly important and difficult job. And trying to help them understand and live with their chan…

Grieving Daily and How to Cope

One parent’s personal journey to deal with the loss of your child from cancer. Losing a child is nothing you can prepare for.  Often you never want to admit it even after it happens.  I know, I’ve been there.  After losing our daughter to DIPG, our response was to form a community and over the years we’ve met many other families that have walked the same path as we do daily.  And while I don’t ever profess to have the solution to grieving, we have found ways to cope that many other families hav…