Hear the Rare

Episode 12 features Dr. Nick Vitanza who was part of the first interview that I hosted with Jace Ward. He was Mithil's first doctor and now serves on the Board of the Mithil Prasad Foundation and is a close friend to our family. Dr. Nicholas Vitanza is a pediatric neuro-oncologist at Seattle Children's Hospital and laboratory researcher at the Fred Hutchinson Cancer Research Center. In clinic, he cares for children with central nervous system tumors and, in the lab, he focuses on understanding the epigenetic aberrations of diffuse intrinsic pontine glioma (DIPG) and its molecular vulnerabilities with the hope of improving outcomes for affected children. He also assists in the development of immunotherapy clinical trials for children with brain and spinal tumors.

Episode 6 features Jill Morin, mother of DIPG warrior Luke Morin. She is the founder of Luke's Posse which raises funds for DIPG research at Children's Hospital Colorado. In this episode, listen to Jill talk about Luke's story, the beginning of Luke's Posse, and hear her share some advice for families dealing with a new DIPG diagnosis.

Unfortunately, an important part of the DIPG/ DMG journey is grief. Many families have faced it, many will but hopefully one day it will no longer be a part of these children's DIPG story. However, until that day comes, I think it is very important to talk about grief openly and honestly. Episode 11 serves as a tribute to Jace Ward, the inspiration behind this podcast series, a dear friend, courageous DIPG warrior, and outstanding human being, who passed on July 3rd, 2021. This podcast cherishes the unique friendship I had while having an open and honest conversation about grief

Episode 10 features Yury and Nethan who were my brother’s best friends. They had been friends since they were all very young and never left Mithil’s side through his battle with DIPG. In episode 10, we hear Nathan and Yury talk about their fond memories of Mithil and the lasting impact of Mithil’s passing.

Episode 9 features Dr. Jessica Foster from Children’s Hospital of Philadelphia. Dr. Foster’s current research focuses on immunotherapy for pediatric solid and brain tumors. Specifically she is investigating chimeric antigen receptor (CAR) T cell therapy. The goals of her research are to develop pre-clinical CAR T cells for translation into clinical trials to help these devastating tumors.

Dr. Cassie Kline is the Director of Clinical Research for Neuro-Oncology within the Division of Oncology at the Children’s Hospital of Philadelphia, as well as Assistant Professor of Pediatrics at the Perelman School of Medicine at the University of Pennsylvania. She shares with us her journey to medicine and the DIPG world as well as some things she is excited for as a researcher!

After a short hiatus, we are back! Episode number 7 of Hear the Rare and the first of the new year is with Shannon Raber. Shannon is a nurse practitioner at UCSF. Read more about her at https://kids.ucsfbenioffchildrens.org/providers/shannon-raberListen to her talk about her experiences as a nurse practitioner working with DIPG/ DMG patients!

Episode 6 features Jill Morin, mother of DIPG warrior Luke Morin. She is the founder of Luke’s Posse which raises funds for DIPG research at Children’s Hospital Colorado. In this episode, listen to Jill talk about Luke’s story, the beginning of Luke’s Posse, and hear her share some advice for families dealing with a new DIPG diagnosis.

Episode 5 features Amanda Haddock who is the president of Dragon Master Foundation. Amanda was named a White House Champion of Change for Precision Medicine because of her work with Dragon Master Foundation. Listen to her talk about her son David, forming Dragon Master, DMG and research, and the importance of biopsies and tissue donations in Episode 5!!

Episode 4 features Lisa Ward, Jace Ward’s mom. We talked to Jace in episode 1 to get to know him and his journey more. Now, you can also listen to Lisa’s story about dealing with Jace’s diagnosis, being an advocate, and the ONC 201 extended access program they are very excited about. 

Episode 3 features Dr. Gupta, the chief of Pediatric Neurosurgery at UCSF Benioff Children’s Hospital. He joins us today to talk about his experience as a neurosurgeon, his research with DIPG/ DMG, and biopsies. More information about Dr. Gupta can be found on our website at www.heartherare.com!

Hello, welcome to Hear the Rare! This podcast was started with the mission of creating a platform with easily accessible information to the various perspectives on DIPG. We will be interviewing doctors, researchers, patients, family members, and more to hear about their story. However, before we get started I, Rachna Prasad, wanted to share with you my own story with DIPG and how my brother battled this deadly disease. Check out the (unofficial) first episode of Hear the Rare!

Episode 2 features our first interview with Jace Ward! He is a 21- year- old senior at Kansas State University, a fierce DIPG advocate, and a DIPG patient. Get to know more about Jace and his experience with DIPG in Episode 2. Links with more information about Jace and his journey can be found at heartherare.com under Podcasts, Episode 2. 

This is a brief introduction to what DIPG is for those of you who may have never heard about it. Before the diagnosis of a child, sibling, extended family member, or friend many of us didn't know what this deadly disease was either. Listen to episode 1 for more information!References can be found at heartherare.com under Podcasts, Episode 1