Message from the President
Charlotte Hayes, M.S. President & Founder
15,000+. That is the number of children in the United States who will be diagnosed with cancer this year. This equates to approximately 41 families a day hearing the devastating news their child has cancer. Globally, the number of cases will surpass 400,000. My name is Charlotte Hayes, and I am a second-year neuroscience Ph.D. student at Mayo Clinic in Rochester, MN. My research focus is a cancerous and universally fatal pediatric brain tumor called diffuse midline glioma (DMG).
Pediatric DMG typically forms in a structure of the brainstem called the pons. For this reason, it was previously called diffuse intrinsic pontine glioma (DIPG). No child has ever survived DMG... It is inoperable and impervious to chemotherapy. The standard of care consists of high dose steroids and a six-week course of radiation. However, this only provides a negligible, transient improvement in symptoms and imparts no benefit on overall survival. After diagnosis, median survival is approximately nine months, though many children only survive for weeks. As their disease progresses, they lose the ability to walk, see, swallow, and speak. The cranial nerve compression they experience lends them the distinctive inability to even smile on one side.
I am a cancer researcher by choice, but a cancer patient by chance. A few months into my research career, I was diagnosed with cancer. Ironically, my two and a half year journey with it has included brain metastases that have, at times, resulted in an intimate understanding of the symptoms these young fighters experience. The harsh reality of what they (and their parents) endure sent me on a quest for the hidden truth of why we haven’t made a dent in treating pediatric DMG. The answer? Funding.
Pediatric cancer research only receives 4% of the national cancer research budget each year. As a result, cancer is now the second leading cause of death in children in the U.S. Brain tumors account for more than 25% of pediatric cancer diagnoses and are the leading cause of cancer-related death in children. For children diagnosed with DMG, their chance of survival has never wavered from zero.
To make a significant change, I will have to look beyond my petri dish and textbooks, so I established the KIDS MATER TOO Foundation. Wait. Did we misspell the word “matter“? This play on words is intentional and is a reference to the meninges of the brain (dura mater, arachnoid mater, and pia mater). More poignantly, the missing "t" symbolizes the time children lose when they are diagnosed with DMG. KIDS MATER TOO is dedicated to funding the most promising pediatric DMG research projects. To achieve our goal of maximizing each dollar we receive, everyone who assists with KIDS MATER TOO, including board members, will do so as volunteers. Additionally, we have opted out of establishing a brick-and-mortar location, which would see a portion of donations spent on rent, utilities, etc. To reflect our core value of transparency, we will publish accounting ledgers, tax returns, and impact reports annually on our website.
Our first fundraising goal is $1 million. I understand this is a lofty goal, but I am nothing if not persistent in my pursuit of change. I sincerely appreciate the time you have taken to read about our cause. Cancer is relentless... but so am I. I hope you will join me.
With gratitude,
Charlotte Hayes, M.S.
President & Founder
Board Members
Belle Yu
Vice President
Andrea Busch
Secretary
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