Committed to Moving the Needle Forward.
There is exciting, groundbreaking work happening at children’s hospitals across the United States. Because pediatric cancer is historically underfunded at the federal level, these institutions depend on philanthropists and nonprofits to support moving their research forward to find better treatments and more cures for kids with cancer.
Supporting Research to Give Every Child the Opportunity to Grow Up
The 112 types of pediatric cancers (12 main types and +100 sub-types) are allocated a slim four percent of the total federal cancer research budget.
This results in children continuing to receive therapies for their cancers that were developed over 70 years ago. Therapies that were initially developed for and intended for adults, not children.
This minuscule budget has supported 6 — S-I-X — new therapies approved for use in children (in the first instance) in the last TWENTY-FIVE YEARS.
This means that some types of pediatric cancer haven’t had any new therapies developed in that same time frame.
This means that some pediatric cancers have no protocol. This means that some pediatric cancers have poor to no survival rates.
This means that children are getting therapies that were developed for and predominantly trialed on adults. Children’s growing bodies have different needs and cannot manage the same toxicity as adults. This leads to horrific side effects, physical and cognitive delays, and death.
However, in comparison to instances of cancer in adults, the federal government and pharmaceutical companies consider pediatric cancer rare. Therefore, they do not prioritize anywhere near the amount of funding for research or therapy development specific to children, that would make a meaningful difference for pediatric cancer patients.
This is why foundations like ours exist. To do the heavy lifting of raising awareness in their communities and networks in order to raise funds that support the research that is happening at children’s hospitals around the country — otherwise the funding simply isn’t there.
Work We’re Supporting
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Nationwide Children’s Hospital: CAR-T Cell Therapy Trial
At Nationwide Children’s Hospital, CAR T-cell therapy is being used to treat pediatric patients with relapsed blood cancers (leukemia and lymphoma). These cancer fighting super heroes have been able to cure some patients after a single dose.
Nationwide’s hope is to broaden this potentially lifesaving therapy to treat more patients and get it to them faster. The normal process for making CAR T cells takes about 4-6 weeks and in that time some patients with leukemia become very sick and may not survive to receive the immune cells. CAR T cells can be manufactured on the Nationwide Children’s campus, which shortens the time from collection to infusion to less than 2 weeks.
The clinical research study we contributed to will also hopefully open the door for many more novel CAR T cell therapies in the future.
To date, CMHF has donated over $100,000 to this clinical trial.
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Dana-Farber/Boston Children’s Hospital: Infant Leukemia Menin Inhibitor Research
In conjunction with The Jimmy Fund at Dana-Farber and Boston Children’s, Kate and Matt established The Murph Fund in late 2021 with a $100,000 commitment to specifically support the cutting edge research Scott Armstrong, MD, PhD, Chair of the Department of Pediatric Oncology and a world expert in the treatment of leukemia, and his lab are focused on. Just over a year into their 5-year commitment to fulfill this pledge, CMHF has achieved 60% of this goal.
With a special interest in infant leukemia, Dr. Armstrong and his team are studying one subtype, mixed-lineage leukemia (MLL), which occurs in 80 percent of infant acute leukemia cases and has few treatment options.
MLL-rearrangement happens when a piece of chromosome 11 breaks and fuses to the end of another chromosome. This chromosomal rearrangement leads to the development of a form of leukemia that is resistant to treatment.
After studying the epigenetic effects caused by the chromosomal rearrangement, Dr. Armstrong found drugs that target a protein called menin that might be used to treat MLL.
Through lab studies, this treatment shows promise by starkly decreasing the presence of cancer cells and cancerous tissue and in many cases showed no evidence of cancer for more than a year after treatment. Additionally, the menin inhibitor only targeted specific parts of the genome, sparing the rest, suggesting that the intervention would have limited toxicity in patients.
You can learn more about Dr. Armstrong’s lab and see their publications here.
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Children’s Hospital of Philadelphia: Pediatric CAR-T Research
Every day, CHOP’s Cancer Center team is redefining what a cancer diagnosis means for a child. The center offers the most advanced therapies available anywhere in the world, including cutting-edge clinical trials that reprogram the body’s own immune system to fight cancer.
In memorial of Madelyn James Didio, a fellow infant leukemia patient, we donated $10,000 to CHOP’s Cancer Center Team in 2022.
Additionally, inspired by our special interest in infant leukemia through our experience with Callahan, and our dear friend Maddy mentioned above, CMHF gifted a $35,000 grant to kick off research Dr. Kathrin Bernt, MD is conducting around the phenomenon of the KM2TA rearrangement in infant leukemia (also known as MLL-rearranged) that causes the initial disease of infant acute lymphoblastic leukemia (ALL) to change to infant acute myeloid leukemia (AML). This disease change is a risk factor for all MLL-rearranged infant leukemias and is most often seen post- CAR-T therapy. When the disease change occurs, outcomes are very poor.
Dr. Bernt and her team have dedicated a subset of their research to understanding this phenomenon better so they can help prevent and/or target it.
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The Cure Starts Now Foundation
The Cure Starts Now is dedicated to eliminating cancer as a whole by focusing on one of the most challenging diagnoses, DIPG. DIPG is a fatal brain tumor, with essentially a 0% survival rate.
The Cure Starts Now believes, as do many experts, that finding a cure for this pediatric brain cancer will unlock breakthroughs and cures for all cancers — adult and pediatric.
In early 2022, we donated $1,800 during their annual HeArt auction in support of a wonderfully vivacious 6-year old, Brynnley Neiderhaus, whom the Hare’s met during their time inpatient. The auction featured the last piece of art Brynnley created before she passed away in November 2021.
The goal was to not only support this incredible cause and make a significant donation, but to win the piece during auction in order to gift it back to Brynnley’s parents. Both objectives were achieved and CMHF is committed to continuing to support the efforts of The Cure Starts Now.
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Cincinnati Children's Venetoclax Pharmacokinetic Trial and Infant ALL Relapse Outcomes Study
In 2023, we fully funded $10,000 in grants for the following studies lead by Dr. Lauren Pommert at Cincinnati Children’s Hospital, detailed here.
Document includes research overview, goals and an exciting update for the Venetoclax Pharmacokinetic Trial.
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Children's National Hospital: T-Cell Immunotherapy Research
Catherine Bollard, M.B.Ch.B., M.D. department and program director at the Children’s National Research Institute, is leading work to stand up a clinical trial for immunotherapies to be introduced earlier in treatment, specifically for pediatric T-Cell Leukemias.
This effort is spearheaded by fellow cancer parent, Jenny Kehoe, as a way to honor her 2-year-old son Conor who passed from T-Cell ALL in October 2021. Jenny has partnered with Dr. Bollard and outlined a 5-year plan to raise $1 million to fund this clinical trial at Children’s National.
Currently immunotherapies are referred to as the next frontier in targeted cancer treatment, as they kill only the bad cancer cells, leaving the healthy, good cells. This effective treatment leads to significantly less toxicity and fewer side effects.
Compared to B-cell malignancies, T-cell malignancies have a much worse prognosis. Patients who relapse have even fewer options when treatments fail. Because outcomes for refractory/relapsed T-cell patients are so poor, drug development is a critical area of research.
To date, CMHF has donated $35,000 to Conor’s fund at Children’s National that will directly support Dr. Bollard’s clinical trial. CMHF is committed to continue supporting this project until it is fully funded and working to make a difference for kids with this terrible disease.