I CAN SURVIVE
I CAN LIVE
I CAN COPE
I CAN THRIVE
Welcome TO MPN FORUM LIVE
MPN Forum Live is the only podcast designed exclusively for patients and caregivers of myeloproliferative neoplasms, also known as MPNs. MPNs include the following blood cancers, Polycythemia Vera, Essential Thrombocythemia and Myelofibrosis. MPN Forum Live brings together MPN patients from around the World to share their stories of living life as MPN patients. It’s the home to MPN patient storytelling. The MPN community is a band of brothers and sisters standing together; united to support each other while locked in the fight of their lives. You want to talk about failure not being an option? This is the very definition of failure not being an option. MPN Patients are not just warriors, they are also heroes who often struggle to find the mental fortitude to keep ongoing. Yet somehow, they find the strength to keep moving forward.
From the dawn of time, human beings have shared a deep history of bonding with each other through the form of storytelling. MPN heroes all have fascinating and engaging stories to share. These stories provide MPN patients and their families with a unique experience not easily replicated on traditional social platforms. MPN Forum Live serves as an archival of stories for the families of MPN patients for download by family members and saved forever. Besides patient stories, from time to time, we will feature guest hosts, caregivers, hematologists and experts who can provide insight into medical breakthroughs and the benefits of exercise and a well-balanced diet.
MPN Forum Live is free from the influence of any outside corporations. We are 100% funded by your donations and grants. We encourage you to please consider making a donation at our donation page to help us continue on this journey. If you have comments on our podcasts or would like to be featured on an upcoming podcast, please email us from our contact page.
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THE PATIENT STORY
How I’ve Lived with an MPN Cancer for 33 Years | Diet, Exercise & Mental Health (Jeremy’s MPN Story)
“The most powerful person in the world is the storyteller. The storyteller sets the vision, values, and agenda of an entire generation that is to come.”
Steve Jobs, Co-Founder of Apple, Visionary and Storyteller.
Episode. 1: Jeremy Smith
Episode 1 MPN Forum Live Host Jeremy Smith takes you through some of his experiences as an MPN Patient for thirty-three years this year. From his first diagnosis and interaction with his very first first hematologist who told him he had at best ten years to live. To his 30 Years of working with Stanford Hematologist Stanley Schrier as well as his experiences with Dr. Ruben Mesa and Dr. Richard Silver and Jeremy’s fight to start using interferon. In addition Jeremy discusses why he founded MPN Forum Live and how important he believes the podcast format is for the entire MPN Community.
Next Time on MPN Forum Live
Episode 9: Dr. Hugh Young Rienhoff
Episode 9 | 12.5.22
Dr. Hugh Young Rienhoff Episode
Today’s guest is Dr. Hugh Young Rienhoff, Jr., a San Francisco Bay Area clinical physician-scientist and entrepreneur. He serves as the CEO and a Founder of Imago BioSciences, a clinical-stage biopharmaceutical company focused on developing novel therapeutics for patients with myeloproliferative neoplasms (MPNs), a family of related, chronic cancers of the bone marrow. In November 2022, Merck announced that it was acquiring Imago. They are using a differentiated pathway and mechanism of action to target MPNs, particularly MF, ET and PV. Imago is pioneering a novel Lysine-Specific Demethylase-1 (LSD1) inhibitor called Bomedemstat that’s showing a lot of promise — and is at the doorstep of Phase 3 trials for MF and ET. We discuss their positive clinical data, patient clinical studies and unique approach that may impede natural disease progression and offer a new weapon against MPNs.
Episode 8 | 11.2.22
Today’s guest is Nikki. An ET MPN Patient who’s been kind enough to share her journey with the MPN Forum Live community. While many of us have the same MPN Nikki has her own unique experiences, trials and tribulations. Her story is inspiring and she shares many of her learnings. Hope you enjoy listening to her journey as much as I enjoyed interviewing her.
Episode 7 | 9.20.22
Krisstina Gowin Episode
Today I had the pleasure of interviewing Krisstina Gowin Assistant Professor of Medicine at the University of Arizona for our MPN Forum Live Podcast. I heard her speak this year at the Hutch Center Seattle Patient Conference and she delivered an incredible presentation entitled “Living Well Amidst your Disease” which is about the new field of integrated oncology which provides a much more balanced form of treatment for MPN and Cancer Patients. We also spoke about how important exercise and diet are to improving your quality of life, reducing inflammation and so much more including supplements and a list of questions submitted my MPN Life and MPN Forum members.
Episode 6 | 6.12.22
Czerny Cohen Episode
On todays podcast I am joined by Czerny Cohen VO of Clinical Operations for Massive Bio as well as Fiona Evans lead patient advocate for Massive BIO. You may have not heard of Massive Bio but you will be hearing a lot about them. They have created a service for MPN and Cancer patients that uses an AI-Powered technology which sorts through all available Clinical trials tailored specifically for your particular disease. You will not be shown Clinical Trials that you are not qualified for and they can even work with your medical specialist to help with all of you needs and sign you up for the clinical trials that meet your needs. I believe we will be hearing a lot about Massive Bio and I hope you enjoy the interview and your introduction in to Massive Bio.
Episode 5 | 4.26.22
David Boule Episode
On today’s podcast episode#5 of MPN Forum Live our guest is David Boule a former Navy man whose favorite movie is Top Gun. Who would have thought that? David was diagnosed with PV and is enjoying a very good life in the New Hampshire area where he golfs and enjoys like. As well as being an active member of the MPN Community he is also involved with raising money and supporting patient symposiums and other events.
Episode 4 | 4.13.22
Camille MJ Episode
Camille MJ is vibrant vocal woman living with ET, and loving her life in Arkansas. In today’s episode we chat about how her life has changed since being diagnosed and what her life was like before being diagnosed. Camille has the type of personality you come away with feeling better about life in general. Must be part of that Southern Charm we often hear about.
Episode 3 | 3.30.22
Michael Goldstein Episode
What makes this interview with PV Patient Michael Goldstein interesting and different is that Michael is a Doctor. While there are many similarities between MPN Patient stories this story is different in particular because Michael is a Doctor and he sees thing differently. Michael is also a regular guy who happens to be from New York whose living his life with PV and trying to enjoy this grand journey called life. We take about Interferon, New York and Michael’s Family life. hope I hope you enjoy this episode.
Episode 2 | 3.14.22
Jeremy Moberly Episode
Jeremy Moberly was diagnosed with Polycythemia Vera in 2018 and is statistically on the younger end of the typical MPN Patient. We talk with Jeremy about his initial reaction to the diagnosis and how he has changed his life to live in this New World.
We also talk about the importance of diet and exercise as well as how a thirty something MPN Patient deals with dating and sharing his situation with potential life partners.