Where do your donations go?
Childhood cancer is rare. For children born in the United States, 1 in 285 will be diagnosed with cancer before they reach age 20. Advances in treatment have increased survival for many children. However, cancer remains the second leading cause of death in children ages 1 to 14, after unintentional injuries. Brain cancer is the most deadly form of childhood cancer, with DIPG being its most deadly form.
The good news is that for many forms of cancer, survival rates are improving, even though the investment in childhood cancer research is not where it should be. We appreciate that there are many wonderful organizations around the world doing great things to support research into finding cures for the life altering and, unfortunately, deadly effects of childhood cancer. Lace ‘Em Up for Libby will work with these organizations to ensure that all $$$ raised will have the biggest impact in finding a cure for childhood cancer, particularly brain cancer and DIPG.
Along with finding a cure, there are also many organizations that provide comfort and compassion to those children and families who are suffering because of cancer.
Below are a few of the organizations that we are supporting:
ChadTough Defeat DIPG Foundation
This organisation was formed by a partnership then merging of the ChadTough Foundation and Michael Mosier Defeat DIPG Foundation. They are committed to finding a cure for brainstem tumors known as diffuse intrinsic pontine gliomas (DIPG) and diffused midline gliomas (DMG). The Foundation seeks to make a difference by raising awareness of DIPG and by providing funding for research into effective treatments for DIPG.
Lace ‘Em Up for Libby has supported the ChadTough Defeat DIPG Foundation for a few years, but in 2023 we became a Research Partner. Our first cofunded research project was to support Dr. Deblina Sarkar’s research at MIT, aiming to develop the first non-surgical brain implant for bioelectric therapy. This innovative technology involves tiny injected devices that travel through the vascular system, self-implanting in both detectable and undetectable tumor regions. The potential benefits include reducing therapy time to mere minutes per day, enhancing the effectiveness of chemotherapy and radiation, and eliminating the need for invasive surgery.
We are looking on co-fund a second research project and will share news as we have it.
Hopkins Brain & Eye Tumor Laboratory
This Laboratory holds particular significance. During Libby’s treatment, her doctors successfully managed to take some of her cancer cells and reproduce them. The Laboratory is using those cells to further their research into metastatic DIPG. Dr Jeffrey Rubens, who was Libby’s primary doctor through her care and works in this lab, has this to say:
It was obvious the first time I walked into Libby’s hospital room that I was meeting a unique and very special girl. She was about to have brain surgery yet the stress and anxiety that comes with such an event was lost in her humor, quick wit, and bright smile. Seeing Libby was always a bright part of my day in the hospital, but it also made it all the more devastating and frustrating to be limited by our current medications that were inadequate to fight her terrible disease. DIPG is an aggressive childhood brain tumor that does not respond to our current medications and takes the life of too many boys and girls like Libby.
Fortunately, our understanding of the biology that drives DIPG’s aggressive behavior is rapidly improving and we are starting to develop new therapies that are hopeful in the battle against this cancer. Researchers are more optimistic today than ever before that we will soon have medications that can improve DIPG survival. However, so much more has to be done to figure out better therapies to battle this terrible cancer and ensure that we do not continue to lose incredible young boys and girls like Libby to this devastating disease.
Johns Hopkins researchers have also made exciting progress, successfully growing Libby’s cells
in tiny fish brains. They explain,
The idea for the fish is that they are vertebrates similar to mice, with all the same brain parts as humans. The fish we are using are tiny, about the same size as this comma(,) and so will fit into small plastic dishes. We can put 300 fish into small ‘wells’ on a plastic plate – 3 fish per well and 96 wells per plate. We can then add drugs to the water and see if we can kill the tumor cells (and not kill the fish). We can put about 100 of
Libby’s cells into each fish, and we can do this in about an hour. This allows us to create a lot of fish with DIPG tumors, so that we can find out what drugs work and potentially advance those drugs to clinical testing in mice, hopefully accelerating the advancement of promising drugs.
Children’s Cancer and Leukemia Group
So much of Libby’s family is based in the UK and they felt that they could do their bit by reaching out to organisations closer to home. So far they have raised over £3000 for this worth while organisation.
The Goodwin family personally experienced the memories that Casey Cares helps to create, along with their wonderful pajama drive that became a favorite of Libby’s. Each you in connection with the local Chick-a-fila and South River High School, Lace ‘Em Up for Libby helps collect as many pairs of Pyjama’s as it can
As the story goes, was it a midlife crisis or just fate, but the Goodwin family signed up for the Zaching running festival in 2016. Little did they know that they too would need their support. Since Libby’s death the bond between our two organizations has grown. We are very proud to be a supporter. Their mission: To improve the quality of life for cancer patients and their caregivers by providing support through direct patient services and programs, scholarships, and grants.