Each month, the Children’s Brain Tumor Tissue Consortium highlights the stories and contributions of families, foundations, and researchers to find cures for pediatric brain tumors. If you would like to share your story as a guest blogger, please email firstname.lastname@example.org
By Amanda Haddock, President of Dragon Master Foundation
What are some of the challenges faced by the pediatric research community?
Just recently, I talked to someone who told me that their child’s doctor told them not to worry about the “bump” they were investigating on his eye because “kids don’t get cancer.” If pediatricians are saying things like that, then what does the world at large believe? I thought I’d address a few of the challenges facing the pediatric research community – from perception to more physical challenges.
Challenge 1: Public perception
Most of us in the pediatric cancer research community got here by chance. Someone we know or love was diagnosed, and we were plunged into a world that we didn’t know existed. After all, the media would have us believe that childhood cancer is mostly a thing of the past. You see smiling faces and the occasional bald head in a tv commercial, so it is easy to believe that it is a treatable condition. We have made a great deal of headway against many types of childhood cancer, but there are still some as deadly as they were when we first discovered them.
When my son, David, was diagnosed with brain cancer, I thought we would find a way to beat it. I believed those commercials. We had faith and hope. We took advantage of every innovative treatment we could find. But he still died.
Families dealing with pediatric cancer understand that we have a long way to go toward cures, and more importantly, they understand just how few tools researchers have at their disposal. The general public just doesn’t see the reality that we see.
How You Can Help: Get involved in awareness campaigns that talk about childhood cancer. Learn how to use social media to help people understand that cancer is a real threat to our children and takes thousands of lives every year.
Challenge 2: Funding
The majority of cancer research funding from our government goes to adult cancers, leaving pediatric cancers vastly underfunded. The grants that are given by the government are highly competitive, and take up valuable time that researchers could be spending in the lab.
The majority of funding for pediatric cancer research comes from foundations. And while foundation funding might be somewhat easier to get, it is still difficult for researchers to find the foundations who can help fund their work. And foundations have considerably less money than the government, which means funding dollars are a precious resource.
How You Can Help: Ask for donations to a research foundation instead of gifts for your birthday, or host a fundraiser. Nights out at restaurants like McAllister’s or Chick-fil-A are easy to host and don’t cost you anything. In the effort to raise money for research, every little bit helps! Also, before you donate money, make sure you are choosing a foundation that will ensure that money is spent on open access research. Don’t let your money go to an institution that refuses to share data!
Challenge 3: Collaboration
Let’s pretend for a moment that the public understood the needs that exist and started donating in droves toward pediatric cancer research. Even with that amazing boost, there is still a fundamental problem that faces pediatric cancer researchers: lack of data.
A lot of pediatric cancers are rare, and no one institution can collect enough samples to do the analytics needed to discover new treatments. The GA4GH says that we may not even be able to acquire enough data in one country! Sharing these precious resources is the only way to move the science forward for everyone.
How You Can Help: Ask your doctor what happens to your medical records – especially if you or a loved one are undergoing cancer treatment. Simply “sharing” the data isn’t enough, the sharing has to be wide-spread. We support Cavatica.org because it allows for worldwide, open access sharing of clinical and genomic records to give researchers the most complete picture of what happens to a patient during treatment. We also believe that this open access data has the highest probability of helping each individual patient get the exact care that they need to survive.
Challenge 4: Time
Unlike adults, children’s cells are rapidly dividing. Their bodies are going through changes that make cancer treatments more complicated than they would be for adults, and their bodies hold the residual effects of those treatments for years – if they survive. Unfortunately, some children are diagnosed with extremely aggressive cancers , like DIPG, that take their lives before we can even learn much about the disease. All of these factors mean that time is of the essence for pediatric researchers.
How You Can Help: Don’t wait until someone you love is diagnosed. As many of us know, once your child is diagnosed, it is often too late to begin looking for a cure. I wonder what might have happened with my son if we had somehow gotten involved in the research effort five years earlier. We are on the cusp of making major discoveries that will change lives, but they will still come too late for many children who are battling cancer today. The faster we work, the more children we can save tomorrow. Please find a way to get involved and help us find these cures faster. Your loved one could be the person we save.
We are living in a time of rapid progress in the field of medical research, but children are frequently the last to benefit from medical advances. Let’s join together to make sure our children come first – not last.