The Avery Huffman DIPG Foundation announces contributions to two West Coast-based labs

Dr. Michelle Monje of Stanford University and Avery Huffman DIPG Foundation executive director Brandon Huffman (top)Dr. Nick Vitanza of Seattle Children’s Hospital and Avery Huffman DIPG Foundation co-founders Brandon and Amanda Huffman (bottom)

The Avery Huffman DIPG Foundation (AHDF) is announcing major contributions to two research labs on the West Coast, one in California and one in Washington.

Both labs hold significant meaning to the Avery Huffman DIPG Foundation- The Monje Lab at Stanford University and The Vitanza Lab at Seattle Children’s Hospital.

The Monje Lab, headed by Dr. Michelle Monje is part of the Department of Neurology & Neurological Sciences at Stanford University.

The Vitanza Lab, headed by Dr. Nick Vitanza, is part of the Ben Towne Center for Childhood Cancer Research at Seattle Children’s Hospital.

The Avery Huffman DIPG Foundation has donated $30,000 to the Monje Lab and $30,000 to the Vitanza Lab.

Upon Avery’s passing in February 2016, her tumor and brain were donated to the Monje Lab and cultured cells have been used in over 30 hospitals around the world and in research projects done by Dr. Monje, one of the most renowned DIPG-specific doctors in the world.

A former partner at the Monje Lab, Dr. Vitanza now heads the Vitanza Lab at the Ben Towne Center for Childhood Cancer Research and he too uses cultured cells from Avery’s tumor for his research and treatment, which is one of the most well-regarded DIPG treatment programs in the United States.

“Having the opportunity to support two of the most prominent doctors and labs in the world, geared specifically to fight DIPG is something our foundation is pleased and thrilled to be able to do,” said Brandon Huffman, the executive director and co-founder of the Avery Huffman DIPG Foundation.  “As our foundation celebrates seven years of fighting for a cure for DIPG, we couldn’t think of two better labs or doctors, who have personally impacted us in their research and support of our foundation but more importantly, in their commitment to finding a cure and fighting for these children, to support.”

The Avery Huffman DIPG Foundation (previously known as the Avery Huffman Defeat DIPG Foundation), has previously supported both the Monje Lab and the Vitanza Lab, in partnership with other foundations and in specific projects.

This round of funding is as a standalone foundation and approved by the board of directors of the Avery Huffman DIPG Foundation, which includes Darin Padur (treasurer), Michael Jeremiah (secretary) and Dr. Suraj Singh, the board’s resident oncologist and Avery’s radiation oncologist, as well as Brandon Huffman and Amanda Huffman, Avery’s mother and the co-founder of the Avery Huffman DIPG Foundation.

Earlier this month, the Avery Huffman DIPG Foundation announced fundraising efforts since its inception in May 2016 of over $1,000,000.

About Dr. Michelle Monje:

Michelle Monje, MD, PhD is a Professor of Neurology and Neurological Sciences and a Howard Hughes Medical Institute Investigator.   Her research program focuses at the intersection of neuroscience and brain cancer biology, with a particular focus on mechanisms and consequences of neuron-glial interactions in health, glial dysfunction in neurological disease and neuron-glial interactions in malignant glioma. Together with these basic studies, her research program has advanced preclinical studies of novel therapeutics for pediatric high-grade gliomas and cancer therapy-related cognitive impairment in order to translate new therapies to the clinic. 

About Dr. Nick Vitanza:

Dr. Nicholas Vitanza is a pediatric neuro-oncologist and translational scientist whose career is dedicated to the care of children with high-grade CNS tumors, particularly diffuse intrinsic pontine glioma (DIPG), diffuse midline glioma H3K27M-altered (DMG), and atypical teratoid rhabdoid tumor (ATRT). During his pediatric oncology fellowship with Drs. Bill Carroll and Elizabeth Raetz at New York University, laboratory projects led to a COG clinical trial and an ASPHO award. He completed a second fellowship in pediatric neuro-oncology at Stanford University and a post-doc in Michelle Monje’s neuroscience/DIPG Lab, in which he performed high-throughput drug screens in patient-derived DIPG models and mechanistic analyses of epigenetic vulnerabilities in DIPG. This work led to publications in Cancer Cell and Science Translational Medicine, as well as a phase 1 clinical trial. In 2016, Dr. Vitanza joined the faculty at Seattle Children’s Hospital. His work and the work of the Vitanza Lab has focused on creating treatment-naïve biopsy-derived patient-derived DIPG/DMG models, discovering targetable molecular and immunologic vulnerabilities in these tumors, and translating these findings into innovative new clinical trials. Dr. Vitanza serves as Seattle Children’s DIPG Research Lead, overseeing a dedicated research program spanning laboratory work to patient care, and CNS CAR T Cell Lead, overseeing CAR T cell clinical trials for brain and spinal cord tumor patients. He has served as the Study Chair of multiple trials delivering repeated, locoregional chimeric antigen receptor (CAR) T cells, including BrainChild-01 (targeting HER2), BrainChild-02 (targeted EGFR), BrainChild-03 (targeting B7-H3), and BrainChild-04 (multi-antigen targeting of HER, EGFR, B7-H3, and IL-13ra2). BrainChild-03 and BrainChild-04 continue to actively enroll patients. His work has been shared at international conferences such as the International Society of Pediatric Neuro-Oncology and published in journals such as Neuro-Oncology, Nature Medicine, and Cancer Discovery. He was also an invited researcher to the Cancer Moonshot Brain Tumor Forum at the White House in 2023. His goal is to better understand vulnerabilities in DIPG, DMG, and ATRT; translate those scientific discoveries into improved outcomes for affected children; and ultimately cure the remaining incurable CNS tumors of childhood.

About the Avery Huffman DIPG Foundation:

The Avery Huffman DIPG Foundation is dedicated and committed to finding a cure for the deadliest form of brain cancer in children: Diffuse Intrinsic Pontine Glioma (DIPG).  The Foundation seeks to raise awareness about DIPG, raise funds to support drastically needed medical research for treatments and a cure and to help support families whose child has received a DIPG diagnosis. Diffuse Intrinsic Pontine Glioma, commonly referred to as pontine glioma, infiltrative brainstem glioma, or DIPG, is a rare terminal tumor of the brainstem that occurs almost exclusively in children. A pontine glioma occurs in the most delicate area of the brainstem (the "pons"), which controls many critical functions, including breathing and blood pressure. Its location, as well as the way it infiltrates normal brain tissue, makes it especially difficult to treat. There are about 300-350 new cases of DIPG diagnosed each year in the United States alone, usually in children under the age of 10.  More than 90 percent of children diagnosed with DIPG will die within 2 years of diagnosis, and most children will live only 9 months.  To make matters worse, these last few months of the child's life are excruciatingly difficult as the tumor interferes with essential bodily functions like breathing, swallowing, eye movement, and balance.  Most children with DIPG develop double vision and lose the ability to walk, talk, eat and drink. Amanda and Brandon Huffman established the Avery Huffman DIPG Foundation in honor of their 7-year-old daughter, Avery Hayden Huffman, who bravely battled against DIPG for 7.5 months before passing away on February 16, 2016.  Like many families who learn of their child's diagnosis, it was the first time the Huffman family had ever heard of DIPG. The Huffman family, with Avery’s sisters Alexandra and Addison and brother Cade, are committed to honoring Avery’s legacy while fighting like she did, to find a cure for DIPG. The Huffmans formerly operated as a chapter of the Michael Mosier Defeat DIPG® Foundation (from May 2016-Dec 2020) under the DBA of Avery Huffman Defeat DIPG® Foundation within Washington state.  The Michael Mosier Defeat DIPG® Foundation was a separate 501(c)(3) public charity. In late 2020, the Huffmans decided to spin off from the Michael Mosier Defeat DIPG® Foundation and establish a separate West-coast-based public charity to carry out similar activities, while also adding in the ability to help also fund DIPG family support. With new medical technology, advancements and increased access to tumor tissue, there is finally hope that we can develop treatments or find a cure for DIPG.  Medical researchers are learning more than ever before about these tumors, with promising new developments that could pave the way for new, effective treatments, and ultimately a cure.


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