Hear the Rare

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