Dennis’s story

Dennis is a retired minister, husband and father who is focused on his artwork and writing a series of books for his grandchildren. Dennis was diagnosed with multiple myeloma at 72 and he is currently in remission. In his own words, “my hope for the future is to live to 100, with sound mind and body… I love life and I love living and I have more appreciation for life than ever before.”

Produced by Samantha Keyes and Georgianna Moreland

Nicole’s story

Nicole Johnson is the co-founder of the FOXG1 Research Foundation and the mother of 11-year Josie who suffers with a rare neurological condition, FOXG1 Syndrome. With more than two decades of experience in media and communications, Nicole serves as Executive Director overseeing every vertical across the organization. Nicole was a co-founder and Director of Communications for streaming music service, Qello Concerts, sold to Stingray in 2018. Prior, Nicole was a producer for CNN and NBC, and worked in Corporate Communications for several Fortune 500 companies.

Nicole is also the creator and author of the "Joyfully Josie" children’s book series and digital platform about disabilities and rare diseases. For more information, see her website: www.JoyfullyJosie.love.

In Nicole’s own words, “I always come back to the story … I have this vision of Josie in her dorm room one day, you know with her music posters on the wall…she's talking to her roommate, and she says you know I was born with this condition called FOXG1 Syndrome and it was really bad. And you know, my mom and a team of parents got together, and they started this work ... I don't have it anymore, and nobody does. And then they just carry on with their day. So that's my hope. And hope is too soft a word… that is my belief.”

See below for more information on FOXG1:

website:  www.foxg1research.org

What is FOXG1 syndrome: https://foxg1research.org/foxg1syndrome

Help support FOXG1 Research:  https://foxg1research.org/donate

FOXG1 Research Foundation LinkedIn: https://www.linkedin.com/company/foxg1research

Nicole Johnson LinkedIn: https://www.linkedin.com/in/nicole-johnson-foxg1/

Facebook: https://www.facebook.com/foxg1research

Instagram: https://www.instagram.com/foxg1research/

YouTube Channel: https://www.youtube.com/channel/UCYuuje7VFvEu972bXtW-qDQ

Marsha’s story

Marsha is a proud grandmother who dreams of taking her granddaughters to Disney World, gardening and finding love. She was diagnosed with MS at 37 after spending years caring for other MS patients. In her words, “I am dealing with it my way. I am dealing with it by being optimistic. I pray a lot and I take good care of myself…This is not the end for me. This is close to the beginning.”

Produced by Samantha Keyes and Georgianna Moreland

MaryAnn’s story

MaryAnn is a wife, mother, sister and grandmother who looks forward to being more active, traveling and spending time with her grandchildren. She was diagnosed with multiple myeloma at 67 and is currently in remission. In her words, “I am not worried about multiple myeloma doing me in… I am stronger than that.”

Produced by Samantha Keyes and Georgianna Moreland

Nathan Peck is the CEO of Cure VCP Disease, a VCP disease patient, husband and father.

Nathan possesses a Bachelor of Industrial Engineering from the Georgia Institute of Technology as well as an MBA and Masters of Civil and Environmental Engineering from the Massachusetts Institute of Technology. As a patient, in January 2018, he formed Cure VCP Disease, Inc. along with a passionate group of IBMPFD patients, caregivers and researchers.  Through Cure VCP Disease, Inc. he is committed to bringing together patients, caregivers, researchers, pharmaceutical companies, other non-profits and investors to identify treatments and ultimately a cure for this ultra-rare, genetic disease. Being a patient with the disease drives the organization’s urgency and purpose.

In Nathan’s own words, “our goal is to make Cure VCP disease extinct… I don't want this organization to become big and long lasting. I want it to die because we conquered the disease, and we helped others in the process.”

See below for more information on Cure VCP Disease:

Website: https://www.curevcp.org/

What is VCP disease: https://youtu.be/behsJnCjbrk

Help support Cure VCP Disease: https://givebutter.com/2023VCPScientificProgram

Email: info@curevcp.org

Produced by Samantha Keyes and Georgianna Moreland

“Patients in their own words,” features patients sharing their health journeys, the challenges they face and their hopes for the future. Many of the participants are from ZS’s Patients as People Co-Lab, a panel of patients that work with ZS across multiple initiatives and issues. Other patient participants were identified through ZS’s work in rare diseases. 

Being patient-led starts with listening. These inspirational stories can serve as guideposts for pharma, and healthcare in general, as they strive to become patient centric.

Chris’s story

Chris is a single father of two young boys who looks forward to biking again with his kids. He was diagnosed with MS at 17 and his journey has had its challenges, but he isn’t giving up. In his words, “I have MS, it doesn’t have me.”

Produced by Samantha Keyes and Georgianna Moreland

Host, Victoria Summers, welcomes colleagues Sharon Suchotliff and Hensley Evans to discuss the future of patient centricity and the need for pharmaceutical companies to measure their Patient Outcome Impact, or POI™, to supplement their traditional measures of performance. In addition, they explore models from other industries that could serve as inspiration for change and share their hopes for the future. This conversation is based on chapter 12, “The Future of Patient-Centric Pharma from their recently published book.”

Featuring: Sharon Suchotliff, associate principal at ZS and ZS’s patient centricity lead, and Hensley Evans, principal at ZS and leader of ZS’s global transformation practice. Sharon and Hensley are the coauthors of “Reinventing Patient Centricity: Bringing Patient-led Business Models to Life.”

Produced by Samantha Keyes and Georgianna Moreland

In the first episode about patient-centricity transformation, Torsten outlined how to shift the hearts, minds and hands of people in the organization. This episode continues the conversation and focuses on shaping the organizational structure and operating model to support patient centricity. Specifically, the need to break with traditional, and often successful, ways of operating, as well as the approaches and models organizations can adopt. This conversation is based on chapter 10, “Transforming to a Patient-Centric Organization.”

Featuring: Torsten Bernewitz, principal emeritus at ZS. Torsten created and led ZS’s global change management expertise center.

Produced by Samantha Keyes and Georgianna Moreland