$1M gift from Yuvaan Tiwari Foundation to accelerate pediatric brain tumor research
A loving, funny and smart 2-year-old, Yuvaan “Yuvi” Tiwari’s life changed in the blink of an eye. A busy toddler always trying to keep up with his older brothers and excited to start preschool, Yuvi was diagnosed in December 2020 with diffuse midline glioma (DMG), an aggressive and fatal pediatric brain tumor.
The untreatable Grade 4 tumor grew 20% within 10 days of diagnosis. For the next seven months, Yuvi showed incredible courage, grace and positivity as he endured radiation therapy, multiple surgeries, countless doctor visits and MRIs, and several hospital stays. Yuvi passed away at home on July 30, 2021.
Yuvi’s parents, Parvati and Satya Tiwari, established the Yuvaan Tiwari Foundation to keep their son’s spirit alive and bring the most promising treatments for fatal pediatric brain cancers to patients as quickly as possible. The foundation’s $1 million gift to the Michigan Medicine Chad Carr Pediatric Brain Tumor Center will support research led by Carl Koschmann, M.D., pediatric neuro-oncologist and researcher at the Rogel Cancer Center and C.S. Mott Children’s Hospital.
Koschmann had consulted on Yuvi’s treatment early on as Parvati and Satya reached out to researchers and physicians across the country to seek potential therapies. His research and treatment of children with high-risk brain tumors, as well as his work with clinical trials that utilize promising medications that kill cancer cells, have uniquely positioned him to drive research of devastating pediatric tumors like DMG.
“From the many doctors we approached during the course of our journey, Dr. Koschmann really stood out,” Parvati said. “He is an expert in his field, passionate about moving research forward and genuinely cares about every child he treats. The level of progress that is needed may not come from a single lab, and Dr. Koschmann’s collaborative approach will help to further the understanding of DMG across institutions globally.”
The gift from the Yuvaan Tiwari Foundation is the largest single donation Koschmann’s lab has ever received. The funding is supporting an investigative study that will attempt to bring into the clinic a drug that targets a protein called EGFR and could offer a treatment opportunity for children with brain tumors. Yuvi’s tumor carried an EGFR genetic mutation, but there was a lack of options in this class of drugs to treat him and other children with this mutation.
“This project is particularly compelling because of my personal connection to the Tiwari family, and because it directly addresses the problem that was brought up in Yuvi’s care,” Koschmann said. “Our team is motivated to move this forward in Yuvi’s memory.”
The promise and potential of discovering an effective EGFR inhibitor that can cross the blood-brain barrier is wider than just tumors with EGFR mutations. Koschmann has treated more than four dozen DMG and diffuse intrinsic pontine glioma (DIPG) patients with an exciting new therapy called ONC201, which targets the energy use, or metabolism, of tumor cells. His group has discovered that many of the DMG and DIPG tumors that didn’t respond to ONC201 had drug resistance driven by the EGFR protein.
Since receiving funding from the Yuvaan Tiwari Foundation, Koschmann’s team has already collected significant amounts of data and partnered with the Dana-Farber Cancer Institute in Boston, gathering dozens of brain tumor samples to send to researchers who are looking at the blood-brain barrier and tumor metabolism. This work will form the basis for a trial combining an EGFR inhibitor with ONC201 in a clinical trial for patients with DMG and DIPG.
“The support from the Yuvaan Tiwari Foundation has enabled our team to push the gas pedal all the way down; the pace of research has really picked up,” Koschmann said. “I have no doubt we will be treating our patients with an EGFR inhibitor within five years. Without the foundation’s support, it would likely be 10 years or never happen.”
Funding for this type of work is often difficult to obtain from large national and government organizations like the National Institutes of Health. Pediatric cancers receive less than 4% of federal cancer research funding, and diseases like DMG and DIPG are granted a small fraction of that amount.
“There’s a lot we can learn from studying a unique and complex disease like DMG, Parvati said. “With more focused research and the brightest minds working on it together, there is potential to also uncover treatment options for other types of brain tumors as well as other types of cancer.”
Moving forward, the Yuvaan Tiwari Foundation will remain focused on advancing research while also providing family support and raising awareness of pediatric brain cancers and the critical need to develop knowledge and more hopeful treatments. The foundation has already committed nearly $2 million to groundbreaking research initiatives that approach childhood brain cancers from all angles.
“I do believe there’s a cure out there, and we just need to focus more attention and resources on it so we can get there faster,” Parvati said. “Yuvi left me with the strength and purpose to work toward a future where no family has to go through the pain, hopelessness, and devastation that come with a brain tumor diagnosis.”