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Hear the Rare Podcast
Приєднався 7 вер 2020
Listen to families, patients, physicians, researchers, foundations, and others speak about their experience with DIPG. We aim to raise awareness by sharing different perspectives of a similar story and foster a sense of hope for this community. Whether you are someone who is new to DIPG and wants to know more, or someone who is already a part of this community, we hope these stories provide you with more insight. As always, we are stronger together!
Episode 12: Interview with Dr. Nick Vitanza
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.
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.
Переглядів: 80
Відео
Episode 11: How I Have Dealt with Grief
Переглядів 432 роки тому
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, cou...
Episode 10: Interview with Mithil's Best Friends
Переглядів 423 роки тому
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. We always talk about the family of the child that passes from DIPG but I thought it would also be interesting to hear another version of this story. When you are so young, losing a best friends is unimaginable and...
Episode 9: Interview with Dr. Jessica Foster
Переглядів 273 роки тому
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 for neuroblastoma, high-grade gliomas, medulloblastomas, diffuse intrinsic pontine gliomas, and other brain tumors. The goals of her research a...
Episode 8: Interview with Dr. Cassie Kline
Переглядів 323 роки тому
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. Dr. Kline specializes in the care of children, adolescents, and young adults with brain and spinal cord tumors of all types. She has ...
Episode 7: Interview with Shannon Raber
Переглядів 203 роки тому
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 @rs/shannon-raber Listen to her talk about her experiences as a nurse practitioner working with DIPG/ DMG patients!
Episode 6: Interview with Jill Morin
Переглядів 543 роки тому
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. More information about the Fall Fest 5K mentioned in the po...
Episode 5: Interview with Amanda Haddock
Переглядів 243 роки тому
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. Amanda serves as the Foundation Liaison for the Children’s Brain Tumor Tissue Consortium Scientific Committee and an advisor to the Duke Glioblastoma Drug Discovery Group. She has also been...
Episode 4: Interview with Lisa Ward
Переглядів 383 роки тому
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: Interview with Dr. Nalin Gupta
Переглядів 593 роки тому
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 @!
Episode 0: My story
Переглядів 1313 роки тому
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 bat...
Episode 2: Interview with Jace Ward
Переглядів 3503 роки тому
This is our first interview on 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 to Jace's Facebook Page and Go Fund Me can be found on your website at www.heartherare.com/podcasts
RIP Jace
My daughter was diagnosed with DIPG in November last year and has already gone through 30 sessions of radiotherapy and then a clinical trial where everything was working out, but in the last MRI on 07/09/21, that is, this week the result showed that the tumor grew again, I would like to know how it was treated and where, could you answer?
How is your daughter?