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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
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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
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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
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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: [email protected]
Produced by Samantha Keyes and Georgianna Moreland
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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
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“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 storyChris 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.”
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Host, Victoria Summers, welcomes colleague Sharon Suchotliff, co-author of the book released in 2022. They discuss what patient centricity is, why it’s no longer a nice to have, but a business imperative, the and the impact a patient centric focus can make for patients, the ecosystem, and life sciences business. This conversation is based on chapter 2 in the book, “The Forces Propelling Patient Centricity” and chapter 3, “Defining Patient Centricity.”
Featuring: Sharon Suchotliff, associate principal at ZS, ZS’s patient centricity lead and coauthor of “Reinventing Patient Centricity: Bringing Patient-led Business Models to Life.”
Produced by Samantha Keyes and Georgianna Moreland
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Host, Victoria Summers, welcomes colleagues Fiona Taylor and Michael Thomas to unpack the experience of people living and managing their diseases, what obstacles they face, and the realities of navigating a complex healthcare system. For many people, especially those facing complex and challenging conditions, including rare diseases, the healthcare journey is more aptly described as an odyssey. This conversation is based on chapter 1, “The Healthcare Journey,” and explores these efforts in more detail.
Featuring: Fiona Taylor, principal at ZS and leader of ZS’s global qualitative expertise center, and Michael Thomas, principal at ZS and leader of ZS’s global rare disease practice.
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Host, Victoria Summers, welcomes colleague Tina Shepley to discuss how patient empowerment has evolved and what it looks like today from a global lens. In addition, Tina shares advice on effective patient activation strategies and walks through several examples across conditions and geographies. This conversation is based on chapter 8, “Activating and Reaching Patients in an Evolving Media Landscape.”
Featuring: Tina Shepley, associate principal at ZS in the London office and a leader of ZS’s patient health and equity accelerator.
Produced by Samantha Keyes and Georgianna Moreland
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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.”
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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.
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Victoria welcomes Principal Emeritus Torsten Bernewitz in ZS’s global change management expertise center. In this two-part discussion, they discuss the business imperative for patient centricity, as well as how pharma should transform both the people and their environment to be successful. Part one specifically focuses on shifting the mindsets and behaviors of the people in organization, with examples and tools to bring this to life. 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.
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Host, Victoria Summers, welcomes colleagues Tanya Shepley and Dan Ogletree to discuss embracing the patient-centric mindset, tearing down silos in the healthcare ecosystem and how mining data can help us improve the patient experience and drive improved outcomes for all. This conversation is based on chapter 9, “Transforming the Treatment Experience.”
Featuring: Tanya Shepley, principal at ZS and advisory lead of ZS’s digital patient experience and services team and Dan Ogletree, principal at ZS and leader of ZS’s digital patient experience and services team.
Produced by Samantha Keyes and Georgianna Moreland
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Host, Victoria Summers, welcomes colleagues Fiona Taylor and Albert Whangbo to discuss the need to go beyond the data to understand the lived experience of people living with diseases. They explore the impact of the social determinants of health on experience and outcomes as well as various quantitative and qualitative methods for gathering a full picture of the lived experience. This conversation is based on chapter 5, “Understanding People, Not Patients.”
Featuring: Fiona Taylor, principal at ZS and leader of ZS’s global qualitative expertise center, and Albert Whangbo, principal at ZS and leader of ZS’s real world data and insights team.
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Host, Victoria Summers, welcomes colleague Emily Mandell to discuss how a patient centric approach can work to ensure that patients get the right diagnosis and the right treatment more effectively. The conversation also covers what a patient centric product launch looks like and how the industry is continuing to evolve to improve patient outcomes. This conversation is based on chapter 7, “If You Launch It, They Will Come … Or Will They?”
Featuring: Emily Mandell, principal at ZS and leader of ZS’s global pipeline and launch strategy practice.
Produced by Samantha Keyes and Georgianna Moreland
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Host, Victoria Summers, welcomes colleagues Lisa Bance and Nikita Reznik to discuss the role of patient centricity in the drug development process, the impact of identifying the patient need first, and what that looks like in practice. This conversation is based on chapter 6, “Removing Barriers to Participating in Clinical Trials.”
Featuring: Lisa Bance, principal at ZS and a leader of ZS’s research and development practice in Europe, and Nikita Reznik, manager at ZS leading ZS’s patient-centric medical affairs services.
Produced by Samantha Keyes and Georgianna Moreland
