Claire Rose, Cancer Survivor

What's in a name?

Where did the name "Forever Fierce" come from? During 4 year old Claire's year long treatment for cancer, she proved to be a force to be reckoned with. Come chemo, surgery, or fevers, Claire remained positive, upbeat, and always dancing. This earned her the Shakespeare quote "Though she be but little, she is fierce," as her "motto." She has now finished treatment, and will be "Forever Fierce" against childhood cancer, by fighting back with funding for research.

How Forever Fierce Came to Be

Dave and Michelle's daughter Claire was diagnosed with cancer at just four years old. She battled her way through 17 rounds of chemo, a massive surgery, and endured over 200 inpatient stays at John's Hopkins Children’s Center in Baltimore. They are blessed to now say Claire is in remission, however, after watching their daughter fight for her life for over a year, Dave and Michelle realized it was their calling to stand up, and make a difference. In November of 2015 Dave and Michelle partnered with their friend and local business owner Scott Connor, to create the Forever Fierce Foundation. Since then the small group has now doubled, with the addition of Marketing Director Dan Kesterson, and Directors of Funding Allocation: Dr. David Loeb, and RN Lauren Wendt. We have created this foundation with one goal in mind: ending childhood cancer. The United States allocates just 3.8% of funding spent on cancer research to all 20+ types of childhood cancer to share. We believe that until that changes, it is our responsibility to privately fund childhood cancer research by conducting fundraisers throughout the year. We donate directly to research labs working on new, safer, and innovative ways to treat childhood cancer.

How Research Gets Funded

Written by Dr. David Loeb (Pediatric Oncologist)

The vast majority of biomedical research, especially cancer research, in the US is conducted either by pharmaceutical companies or by faculty members at academic medical centers.  As you might imagine, the main driver behind pharmaceutical company-funded biomedical research is the development of products that can be sold on the market to make a profit.  Thus, childhood cancer tends to be a low priority investment for these companies because the market is very small.  This means that most research into childhood cancer is done by faculty at academic medical centers.

Most faculty at academic medical centers are essentially independent contractors.  For example, I am obligated to und my own salary by obtaining research grants from external sources and by generating professional fees (the money your insurance company pays Hopkins when you see me in clinic or on the inpatient side).  There are limited sources for external funding for childhood cancer research.  One source is pharmaceutical companies, but they tend to only provide financial support to clinical trials using their drugs, and almost never fund laboratory research.  And, as you can imagine, their priorities are driven by the need to make a profit (which is OK… we live in a capitalist society, and all companies exist to make a profit).  There are foundations that fund research, but most foundations get their money from philanthropy, which usually means relatively modest donations from “private citizens.”  The lion's share of the money to pay for research grants comes from the National Institutes of Health. 

The NIH is a very well-funded government agency, but the biomedical research community in the US is enormous, and so there isn’t enough money to go around.  At one point, the NIH had enough money to fund 25% of the grant applications they received.  Unfortunately, for a variety of reasons, that cut-off is now 9%.  So, less than 1 in 10 grant applications is funded.  As you might imagine, when money is tight, pressure is placed on the NIH to fund applications with broad public health implications.  Although childhood cancer is the number 1 disease killer in kids, it is still less of a public health menace than breast cancer, lung cancer, and colorectal cancer… so it is easier to get a grant to fund breast cancer research than it is to get a grant to fund sarcoma research.

How much does research cost?

This is an important consideration, especially if the burden of funding childhood cancer research has to fall onto charitable foundations to pick up the slack created by an ever-decreasing NIH budget.  Modern biomedical research is very expensive.  The salary of a research technician (the people who actually do the work in the lab) can be anywhere from $35,000 to $50,000 per year.  The mice we use for our Ewing sarcoma experiments are $39 each and the cost of housing the mice is almost $1 per cage per day (5 mice per cage).  The average research technician goes through about $15,000 per year in research supplies.  The salary of the lab director also has to be funded in part through these grants, as was discussed above.  So, in order to fund a single year’s worth of research performed by a single research technician, a lab director has to raise approximately $100,000. What does this mean?  The average research grant from a philanthropic foundation is $50,000 per year.  The average large NIH grant covers $250,000 in research costs per year.  With a funding cut-off of 9%, the net result is that the average lab director spends the vast majority of his/her time writing grant applications to cover research costs.

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Passion Over Profit

We take no salaries at Forever Fierce. We are run purely by volunteers, so that more of your donations can go directly where it is needed most, childhood cancer reseach. Our motto "Fierce Against Childhood Cancer" means that we will never stop fighting to destroy this disease, by continuing to raise awareness, and directly fund research to eradicate childhood cancer.

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One Piece at a Time

Research like anything takes time. This is a complex puzzle our researchers are putting together. Help us give them the pieces they need to complete their mission to erradicate childhood cancer.

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Research Development

Help us deliver the tools and equipment required to conduct cutting edge research. All donations will be focused on facilitating an active research lab.