A child’s first steps. It’s a milestone of joy for any parent.
But what if your child inexplicably stopped walking a few months later? What if the problem you thought was a minor muscle pull was instead something unthinkable. That’s the situation one family is facing, because their daughter didn’t have a slight injury like the parents and their doctor first thought.
Instead, she has an inoperable brain tumor.
Childhood cancer is an especially devastating diagnosis, because it’s a horrific thief. For an adult with cancer, the impact is difficult: on the average, an adult cancer victim loses 15 years of life.
But for a child? The average loss is 71 years.
So few words could strike more terror into a parent’s heart than hearing a child has cancer. And too many families, desperate to care for a child, sacrifice everything—their finances, their relationships, even their own health—in the hope for, if not a cure, at least a remission.
Because the thought of any child losing 71 years is unbearable. And that’s why we think recognizing September as Childhood Cancer Awareness Month is particularly important.
Emotions Run High For Childhood Cancer. But Not Necessarily Funding.
Childhood cancers still kill a full quarter of their victims. And cancer is still the largest killer of children under the age of fifteen. Yet public childhood cancer funding is light—less than five percent of the U.S. Government’s yearly funding for cancer research is dedicated to childhood cancers.
That’s because statistically, cancer is a relatively rare disease among children. Funding goes to adult research. Childhood cancers are infrequent enough that patient groups can be too small to assess the performance of a specific treatment. Drug companies limit research on pediatric cancer drugs because they’re typically not profitable.
In a paradoxical way, childhood cancer is something of an orphan disease.
That makes it no less devastating. And that’s why private fundraising is critical. Awareness created National Childhood Cancer Month drives funding for research, patient care, and family support. Most childhood cancer organizations—even the nation’s largest ones—rely on private donations for the bulk of their monies. St. Jude Children’s Research Hospital, for example, reports that 75% of its nearly $700 million in annual operating funds comes from private contributions. The average individual donor gives $33.13.
Yet We’re Continuing To Gain Ground With Treatment. And Big New Ideas Are On The Horizon.
It’s easy to feel frustrated at the sight of a single sick child that can’t be cured. But the numbers show that significant progress has been made—the five-year survival rate for childhood cancers is up over 20% in the last three decades, and mortality rates for many pediatric cancers have decreased more than 50%. Powerful lines of communications and information exchange among researchers have maximized the value of the research being done. And new technologies promise new treatments. One of our portfolio companies, Pure MHC, is working on ways to leverage a person’s natural immune system to trigger responses to tumors. By targeting a protein, Human Leukocyte Antigen (HLA), Pure MHC has found a way to compare the HLA from normal cells to the HLA from cancer cells, then create something called a T-cell receptor mimicking monoclonal antibody (TCRm), which imitates a T-cell (the most powerful immune system cell) to initiate a response. The results have been striking. In testing, TCRms have proven capable of shrinking or totally eliminating solid tumors in mice. For blood borne cancers—the most common cancers in children and teens, accounting for a third of all cases—TCRms have demonstrated the ability to fight several forms of leukemia. They may even be useful in treating inoperable brain cancers. Technologies like this—which also may avoid many of the side effects from current treatments that can lead to chronic conditions in childhood cancer survivors—certainly encourage researchers to push harder.
There’s Still Plenty To Do. Here Are A Few Ways To Help.
Much more research needs to be done. If you’re interested in making a contribution for Childhood Cancer Awareness Month, here are links to several organizations that focus on childhood cancer research and patient support. These are but a few—there are numerous others—and you may already have your own favorites.
If not, objective parties like Charity Navigator can provide you with credible background information on charities to consider.
St. Jude Children’s Research Hospital
Alex’s Lemonade Stand Foundation
CureSearch For Children’s Cancer
What do you want to build today?