The Health Design Podcast

Annie-Danielle Grenier raises awareness and advocates for rare diseases, living with a few herself. She mostly does this as a writer, public speaker and through her blog turned website: Ma vie de zèbre (My Zebra Life). Annie-Danielle launched Ma vie de zèbre in 2013 because she had difficulty finding information in French on hypermobile Ehlers-Danlos syndrome, her only rare diagnosis at the time, and what little she could find wasn't relatable to her province of Québec (Canada). She wanted to changed that! Annie-Danielle is very active as a patient partner, involved in many management, education and research projects and doing things like shaping policies, educating future healthcare professionals, working in bioethics research, and much more. Annie-Danielle was a translator and editor (in French and in English) and before that worked many years in show business (on stage but also behind the scenes). She has a bachelor's degree in psychology, but also studied in Arts and literature and in event production. Annie-Danielle's atypical life experiences give her a different view on things, which she loves to share with people and, she hopes, can inspire. Her motto is that life's obstacles are not obstacles to happiness! Business and collaboration offers can go through here: Annie-Danielle Grenier raises awareness and advocates for rare diseases, living with a few herself. She mostly does this as a writer, public speaker and through her blog turned website: Ma vie de zèbre (My Zebra Life). Annie-Danielle launched Ma vie de zèbre in 2013 because she had difficulty finding information in French on hypermobile Ehlers-Danlos syndrome, her only rare diagnosis at the time, and what little she could find wasn't relatable to her province of Québec (Canada). She wanted to changed that! Annie-Danielle is very active as a patient partner, involved in many management, education and research projects and doing things like shaping policies, educating future healthcare professionals, working in bioethics research, and much more. Annie-Danielle was a translator and editor (in French and in English) and before that worked many years in show business (on stage but also behind the scenes). She has a bachelor's degree in psychology, but also studied in Arts and literature and in event production. Annie-Danielle's atypical life experiences give her a different view on things, which she loves to share with people and, she hopes, can inspire. Her motto is that life's obstacles are not obstacles to happiness! Business and collaboration offers can go through here. Annie-Danielle Grenier raises awareness and advocates for rare diseases, living with a few herself. She mostly does this as a writer, public speaker and through her blog turned website: Ma vie de zèbre (My Zebra Life). Annie-Danielle launched Ma vie de zèbre in 2013 because she had difficulty finding information in French on hypermobile Ehlers-Danlos syndrome, her only rare diagnosis at the time, and what little she could find wasn't relatable to her province of Québec (Canada). She wanted to changed that! Annie-Danielle is very active as a patient partner, involved in many management, education and research projects and doing things like shaping policies, educating future healthcare professionals, working in bioethics research, and much more. Annie-Danielle was a translator and editor (in French and in English) and before that worked many years in show business (on stage but also behind the scenes). She has a bachelor's degree in psychology, but also studied in Arts and literature and in event production. Annie-Danielle's atypical life experiences give her a different view on things, which she loves to share with people and, she hopes, can inspire. Her motto is that life's obstacles are not obstacles to happiness! Business and collaboration offers can go through here: https://www.adgrenier.com/en/

Samira is a healthcare strategy and design leader who has incubated and operated numerous healthcare startups. She is the founder and CEO of Manta Cares Inc., a global community of caregivers and survivors dedicated to transforming the cancer experience, a company that emerged from her experiences as a cancer survivor. Manta Cares designs and develops tools and resources that enable cancer survivors to regain control and peace of mind. As part of the Manta mission, she hosts the podcast Patient from Hell, which Spotify ranks within the top 10% of all globally shared podcasts. She is also a Venture Partner for Sozo Ventures, a global venture fund that invests in category-defining companies. Before holding those positions, she was VP of Product at Visby Medical, where she launched a multi-million dollar infectious disease test. Samira started her career at McKinsey & Company and has degrees from MIT (Biological Engineering), Stanford University (Design), and Wellesley College (Art History). In her spare time, she can be found practicing martial arts, sketching, writing poetry, and playing with her two rescue dogs.

Shruti Mitkus is the Director of Genetic Education and Navigation at Global Genes, a leading rare disease patient advocacy organization. Shruti is a human molecular genetics scientist and genetics educator. She earned her doctorate in Human Genetics from University of Maryland Baltimore and completed her post-doctoral training at the National Institute of Mental Health, researching the genetic mechanisms of neuropsychiatric conditions such as schizophrenia and bipolar disorder. After working in many different areas related to genetics, such as basic research, pharmacogenomics, genetic diagnostics, and variant interpretation, Shruti felt driven to engage more closely with patients and communities. She transitioned to patient advocacy and now directs programs that inform families about the molecular genetic causes of their illness, guide them through the diagnostic process and educate them about gene-based treatments, work that she describes as “genetic advocacy”. While Shruti loves the science of genetics, she is most passionate about translating her knowledge of genetics in an approachable manner and addressing barriers to access genetic testing and cutting-edge treatments. She is an ardent believer in the power of education to empower and ultimately improve the lives of patients and families. Shruti can be reached at https://www.linkedin.com/in/shruti-mitkus-rarediseasegenetics/

Estela was diagnosed with a progressive neuropathy called Charcot-Marie-Tooth (CMT) at four years old, followed by her younger sister two years later. In 2002, she graduated from FIT with a Bachelor’s in Interior Design. Today, her professional background in design, marketing, trend forecasting, and creative direction brings an unexpected approach to connecting the disability community to wellness, empowerment, and health. After volunteering for eight years, Estela joined the Hereditary Neuropathy Foundation full-time in 2018 as their Program Development Manager. Later in 2018, she testified in front of the FDA on the patient experience and the importance of funding CMT studies and potential therapies. As moderator for the CMT-Connect webinar series, Estela enjoys sharing resources and expert information with the CMT community on various valuable topics. On the EmBrace It Podcast, she interviews community thought leaders and aims to empower women living with disabilities in all facets of life. Estela and co-host Lainie Isbia also provide original inclusion workshops focusing on improving advocacy & DEI through communication tools, starting with “How to Communicate with Anyone About Disability.” They’ve worked with many top brands, such as Levi Strauss, Pinterest, Lockheed Martin, The Abilities Expos, SUNY Farmingdale College, Health Union, and more. In 2019, Estela gave her first TEDx talk titled “RePurpose Your Pain” on turning adversity into life’s most beautiful work. She co-teaches inclusive and adaptive design at the Fashion Institute of Technology for their Design for Social Impact program. Estela is represented by Gamut Management, an all-inclusive talent agency.

Dr. Sarah Parker Ward wants to help you think more affectionately about death so you can experience a healthier, more fulfilling life. Sarah holds a Ph.D. in Emerging Media Studies from Boston University where her research explored death cognition and related policy implications. She continues this thanatological work today both in practice and study as the co-founder of We Are Clio, a digital platform launching in 2024 to empower individuals on their deathcare journey through personalized education and community-building with non-clinical care providers such as death doulas, green burial crafters, and legacy artisans. In addition to death doula training, Sarah has also undergone instruction in mindfulness and psychedelic peer support. You can find this mom of three on LinkedIn and on Instagram at @skparkerward.

Neilanjan Nandi, MD, FACP is an Associate Professor of Clinical Medicine at Penn Presbyterian Medical Center at the University of Pennsylvania. Dr. Nandi's practice focuses on the management of Inflammatory Bowel Disease (IBD, eg, Crohn's disease, Ulcerative Colitis) and recurrent Clostridium difficile infection via Fecal Microbiota Transplantation (FMT). Dr. Nandi serves on the executive council of the Philadelphia Crohn's & Colitis Foundation (CCF), the medical advisory board of the United Ostomy Associates of America (UOAA), coordinates outreach on the American College of Gastroenterology Patient Care Committee and is a founding board member of the South Asian IBD Alliance (SAIA). He also regularly peer reviews research publications and serves on the social media editorial board for the premier journals 'Inflammatory Bowel Diseases' and 'Crohn's & Colitis 360.' His research has focused on studying conditions co-morbid to IBD quality of care such as characterizing the management and consequences of iron deficiency anemia and non-alcoholic fatty liver disease in IBD patients. He has a particular interest in the diagnosis and management of refractory Clostridioides difficile infection and the application of fecal microbiota transplantation in C difficile. Dr. Nandi has helped conduct a number of clinical trials of stool derived microbiome therapies. He has also authored numerous book chapters on the diagnosis and management of various viral, parasitic, mycobacterial and bacterial infections of the GI tract. Dr. Nandi’s fervor for clinical education has been recognized with multiple teaching awards including the 2023 Sidney Cohen Faculty Teacher of the Year for the Gastroenterology & Hepatology division of the University of Pennsylvania. He was honored as the 2019 Physician Hero by the Philadelphia/Delaware Valley Crohn's and Colitis Foundation at their annual Take Steps for Crohn's & Colitis event and wields digital & social media platforms to amplify education, outreach & advocacy in IBD to clinicians and patients. He was also awarded the Philadelphia CCF’s Chairman’s Citation in 2022. He is the regular host of an academic podcast : ‘GI Insights: IBD Crosstalk’ which features high yield, evidence based medicine discussions with guests from different interdisciplinary fields critical to providing comprehensive IBD care. Dr. Nandi’s passions include fitness, cooking, virtual reality gaming, reading and dancing. Follow him on social @fitwitmd.

Erin Moore is a visionary leader and innovator focused on transforming healthcare and building a more equitable economy for health and care. As the founder of Meanwhile Health, Erin leverages her strengths in systems thinking, strategic management, and leadership to drive meaningful change. Erin is an exceptionally skilled communicator, serving as an advisor to executives and delivering compelling talks on innovation and healthcare reform. She is also a gifted writer, using her platform to raise awareness of critical issues and share a bold vision for a better future of healthcare. Her unique blend of leadership, strategic insight, and communication expertise allows her to motivate teams, advance complex initiatives, and achieve transformational results.

Dr. La Toya Luces-Sampson, affectionately known as Dr. Toya on social media, is a multi- faceted individual—a wife, mother, board-certified Obstetrician and Gynecologist, entrepreneur, speaker, and best-selling author. Born and raised in Trinidad and Tobago, she journeyed to the United States where she earned both her Bachelors and Medical Degrees from Howard University in an accelerated 6-year BS/MD program. Her medical training was further honed at Pennsylvania Hospital in Philadelphia. Her medical prowess is only one side of the coin. Dr. Toya is a thriving entrepreneur, being the brainchild behind "Buy Default," a curated directory aimed at promoting Black businesses and professionals. She's also the founder and CEO of Amina OBGYN Consultants, an independent contracting company providing hospital-based OBGYN services. Dr. Toya has broadened her medical practice by embracing telehealth, now offering her expertise to the women of California and Texas. Entrepreneurship became Dr. Toya’s beacon out of professional burnout, igniting a passion for patient education. She leverages her social media platforms to embolden women, providing invaluable insights to help them take charge of their reproductive health and advocate for themselves. Her endeavors echo a central message of empowerment and education, making a meaningful impact on her followers and patients alike. Discover more about Dr. Toya’s mission and connect with her: Dr. Toya’s Website Telehealth Services: Amina OBGYN Consultants Follow her on TikTok, Instagram, Facebook and YouTube

Terri Coutee is the Founder and Director of DiepCFoundation. She started the nonprofit organization in 2016, two years after her own successful breast reconstruction, to provide support, education, and resources for those affected by breast cancer facing mastectomy. Terri hosts the DiepCJourney podcast and the DiepC Foundation educational channel where she interviews surgeons, patients, healthcare professionals, and individuals to provide resources and lived stories to listeners. She provides written content through her blog at DiepCJourney.com. Terri is a Project LEAD graduate, an intensive six-day science course designed to train patient advocates from the National Breast Cancer Coalition. She is co-lead on the World Health Innovation Summit shared decision-making expert group. Terri is a consumer patient advocate serving on the DoD-CDMRP for the breast cancer vaccine under the leadership of the team at the Cleveland Clinic. She has co-authored published papers and assisted surgeons and researchers gathering data for on-going studies in breast cancer and breast reconstruction to improve patient experience and outcomes. Terri believes education is the key component for patients being able to have a shared decision-making conversation with their health care team. Here educational resources and social media contact information can be found here: DiepCFoundation Educational Channel on YouTube DiepCJourney Podcast We are on Spotify, Libsyn, Apple Podcasts, and Amazon Music DiepCJourney.com Blog Social Media Channels: LinkedIn: Terri Coutee Facebook: diepCfoundation.org Instagram: diepcfoundation Pinterest: tgcoutee (DiepCFoundation.org) Twitter: @6state

Dr. Eugene Manley Jr is an inspirational speaker that often speaks about overcoming barriers, mentoring, and STEM and workforce diversity. He is a Mechanical Engineer, Biomedical Engineer, and Molecular and Cell Biologist with expertise in musculoskeletal biology, biomechanics, and cancer biology. He is adept at planning and executing complex systems biology problems, imaging, pathology, and combination drug therapies. Currently he is the Founder and CEO of the STEMM & Cancer Health Equity (SCHEQ) nonprofit foundation that seeks to increase STEMM workforce diversity and improve outcomes for underserved and marginalized populations across the cancer care continuum. He previously worked at LUNGevity where he oversaw STEMM outreach and engagement, launched a Minority Mentorship and Training Program, and ran 3 virtual health equity series. Prior to this, he has worked in fundraising and development, scientific grant administration, science writing/communication, and has been a curator of information. He serves on national and international boards regarding health equity, STEMM access and mentoring, and community engagement. His overarching philosophy is not what can he do for himself, but what can he do for those that do not have a voice. Website: https://scheq.org Linkedin: STEMM & Cancer Health Equity Facebook.com/STEMMCHEQ Instagram.com/STEMMCHEQ

Dr. Yun “Sherry” Wang is an Assistant Professor on the tenure track at Chapman University School of Pharmacy (CUSP). Her academic journey is built upon a foundation in Geospatial Science from Washington University in St. Louis, an exploration of Data Science at Monash University, and comprehensive Ph.D. training in Clinical Pharmacy. Since she arrived at Chapman in May 2021, she has established and led the "Patient Safety Lab," a research initiative driven by her profound interests in health service research and pharmacoepidemiology, with a special focus on substance users and chronic disease patients. The "Patient Safety Lab" is a collaborative effort that utilizes diverse real-world datasets to explore various projects, including "Opioid Prescribing and Overdose Deaths Before and During the COVID-19 Pandemic in California," "Utilization of Buprenorphine Treatments in California: A Real-World Assessment of X Waiver Holders and Prescribers," "Spatiotemporal Disparity Mapping of Buprenorphine Treatment," and "Treatment Adherence Disparities among Adolescents and Young Adults with Cancer." These multifaceted projects unite over ten dedicated faculty members and students, fostering collaboration beyond the boundaries of Chapman University. Dr. Wang's professional background encompasses a spectrum of disciplines, including machine learning, epidemiology, clinical pharmacy, health economics, and health service research across Asia, Australia, and the United States. Her contributions are evident through peer-reviewed publications in esteemed journals such as JAMA, Lancet, Clinical Infectious Disease, International Journal of Cardiology, Pharmacogenomics Journal, Drug and Alcohol Dependence, Pain Reports, and Neuroepidemiology. Her editorial role for the "Opioid Epidemic during the COVID-19 Pandemic" Special Issue of the journal Healthcare underscores her dedication to addressing the opioid crisis. Her research findings have garnered attention in ISPOR News Across Asia, Physician Weekly, and the COVID newsletter by the Washington State Department of Health. She received the American Association of Colleges of Pharmacy (AACP) New Investigator Award in 2022. Faculty profile: https://www.chapman.edu/our-faculty/sherry-yun-wang Google Scholar: https://scholar.google.com.au/citations?user=-RicqRIAAAAJ&hl=en

Dr David Beaumont is a Consultant Occupational Physician, a doctor specialising in the health of workers. He is a Past President of the Australasian Faculty of Occupational and Environmental Medicine. He provides consultancy services to some of New Zealand’s major employers and also the provision of health and wellbeing programmes through his company Positive Medicine Limited. His book, Positive Medicine: Disrupting the Future of Medical Practice won the BMA (British Medical Association) Medical Book Award for Primary Care, 2022. David is passionate about helping people realise that to truly experience positive health in their lives they first have to change their own understanding of health. To truly have health it must be viewed as a positive concept, with the realisation that it is integral to every area of our lives. To move beyond being experts in disease, doctors need to be able to treat the whole person and empower people to take control and responsibility for their own lives and health. www.drdavidbeaumont.com www.positivemedicine.com

Our guest on this episode of the HD podcast is Vanessa Joy Walker: Health Consumer Advocate, Survivorship Coach, and Founder of Living After Crisis Inc. Currently pursuing an MPH at UNC Gillings School of Global Public Health, Vanessa collaborates with esteemed organizations such as HMP Global's Psych Congress and Caelum Diagnostic Solutions. Her powerful perspectives on perseverance, patient engagement, social equity, and joy have been featured in prominent outlets like The Wall Street Journal, The Washington Post, The American Cancer Society, K-Love Radio, and Menopause Today. Dedicated to Diversity, Equity, and Inclusion, Vanessa partners with transformative educational firms like The 2043 Project and Point Made Learning, shaping her contributions through a compassionate lens. With over 12 years of experience in healthcare, impact storytelling, advocacy, and operations, Vanessa is devoted to challenging the status quo. She serves as a trusted ally in guiding diverse organizations—whether in healthcare, life sciences, or any organization that prioritizes mental health and well-being. As a published author, sought-after patient advisor, consultant, and coach, Vanessa infuses authenticity and captivating storytelling into every element of her work. From conference rooms to virtual platforms, she fosters empathetic connections through engaging presentations exploring communication's power to ignite change. Connect with Vanessa on LinkedIn @VanessaJoyWalker for invaluable insights and inspiration. For collaborations and inquiries, email vjw@vanessajoywalker.com, and join her in creating a world where health and well-being are human rights."

Nick Holekamp, MD, is the vice president and chief medical officer at Ranken Jordan Pediatric Bridge Hospital. He joined in 2000, and for nearly two decades, he’s helped more than 2,000 children and their families transition from a traditional hospital to home after chronic illness or injuries. Under Dr. Holekamp’s leadership, Ranken Jordan transitioned from a 26-bed pediatric nursing home into a 60-bed, advanced pediatric specialty hospital that is regionally recognized as a center of excellence for the care of children with medical complexities. In 2018, he oversaw a $35-million expansion that nearly doubled the hospital’s capacity, and he continues to lead initiatives that ensure a collaborative, high-quality, patient-centered care environment. He is the chief advocate for carrying out the vision of the hospital’s founder, Mary Ranken Jordan, which was to care for kids beyond the bedside. Dr. Holekamp gives kids their best chance for recovery through Care Beyond the Bedside, the hospital’s care philosophy that melds traditional health care with playful therapies that allows for routine child development, effective rehabilitation, and social re-integration so kids and their families can prepare for successful outcomes at home. His work has helped mold Ranken Jordan into a facility that parents describe as a “seamless, yet critical transition” for their child and that is held in high esteem by medical professionals across the healthcare continuum. In 2017, Dr. Holekamp co-authored “The Effect of a Comprehensive Care Transition Model on Cost and Utilization for Medically Complex Children with Cerebral Palsy, a research paper published in the Journal of Pediatric Health Care. In October, 2018, Dr. Holekamp presented his findings at the annual meeting of the Pediatric Complex Care Association in a talk titled, “An Innovative Model of Transitional Care for Medically Complex Children.” Dr. Holekamp earned a degree in biology from Dartmouth College before graduating from Saint Louis University School of Medicine in 1987. He completed his residency in pediatric and adolescent medicine at Cardinal Glennon Children’s Medical Center. Prior to joining Ranken Jordan, he was a pediatric hospitalist at St. John’s Mercy Medical Center in St. Louis. Website: www.rankenjordan.org

Ibrahim Rashid is the Founder of the Strong Haulers, a digital health platform that leverages data to help those with Long COVID and other chronic illnesses manage their symptoms. He is also the author of Strong Hauler: Learning to Live with Long COVID, a memoir of lessons learned while navigating chronic illness at a young age. His commentary on long covid, impact investing, and politics has appeared in the New York Times, The Atlantic, Scientific American, Psychology Today, the Huffington Post, Wired, MIT Sloan Management Review, and Impact Alpha. In 2021, Impact Alpha named him one of their Ten Voices Who Moved the Conversation for his writing on disability justice and impact investing. He holds a master’s degree in public policy from the University of Chicago. For more information, see https://www.ibrahimrashid.com/

Kathy O'Shea is a 46-year migraineur and 36 year professor of English, who has combined these significant parts of her life into this literary anthology centered around five themes related to migraine. She is the winner the Chancellor's Award for Excellence in Teaching and has two beloved golden retrievers who are official therapy dogs at Monroe Community College in Rochester, NY, where she teaches literature, composition, and humanities courses. She is a regular migraine blogger on psychologytoday.com. Kathy’s anthology has been selected as a first-place winner in Health for Firebird, "Award Winning Finalist” in the Health: category of the 2021 Best Book Awards sponsored by American Book Fest, and has recently received the Book Excellence Award. Kathy has appeared on numerous health-related podcasts to discuss her book and journey with migraine and hopes to use the book to help educate migraine sufferers, their family and friends, medical professionals, and the general public about this debilitating disease. You can get her book ' So Much more than a Headache' here: https://www.kentstateuniversitypress.com/author/kathleen-oshea/

Tanisha Bowman, MSW, LSW, APHSW-C, NEDA Proficient, is a death doula living in Pittsburgh, PA who currently works as a full-time palliative care social worker in a small rural healthcare system. With the support of an amazing palliative care team, Tanisha has been able to explore ways to bring her passion for death care and openness about death and dying into a highly medicalized environment. Her wide range of expertise has piqued the interest of reporters, podcasters, and other medical systems and Tanisha has enjoyed the ability to share what she has learned on a variety of platforms. Tanisha Bowman, MSW, LSW, APHSW-C, CGP, NEDA Proficient Palliative Care Social Worker Death Doula

Christina Gagnon is a former micro preemie survivor, born in 1986. She’s someone who’s defeated the odds at times when medical technology was 50/50. It was the time of trial and error. She’s now come to tell her heroic story to all.

Charles Gellman is the Chief Patient Advocate of HiDO Health. His expertise is in clinical informatics and data analysis which accelerates the understanding of health data to improve health outcomes. HiDO research is focused on reducing home medication errors, avoiding unnecessary hospitalizations and saving billions of healthcare dollars. Together health care can enhance transparency to all providers that enables better patient care and equal access to care for all people. HiDO Background Information https://us.hidohealth.com/about YouTube Channel https://www.youtube.com/channel/UCS-E9J74PeAT0ioieZOZBEQ

Soula Mantalvanos Artist, designer and gallerist. Advocate for the better quality of care, founder of My Health Story. Soula combines her years of living with chronic pain and her professional creative communication experience to advocate for a better quality of care. In addition to presenting at medical conferences, Soula has self-published a book, appeared in an award-winning documentary and established the website pudendalnerve.com.au. Soula offers her personal story on the website and found resources to help with the endurance and treatment of chronic pain. Soula's most outstanding achievement is founding My Health Story, an engaging, safe and innovative way for patients to generate and store their personal health experiences. My Health Story (founded as PainTrain – My Health Summary) initially concentrated on pain management. However, founder Soula Mantalvanos realised she could expand her novel health summarising idea to help people with other chronic health conditions such as Stroke, Dementia and aged care. pudendalnerve.com.au myhealthstory.com.au Design portfolio ooi.com.au Learn more about becoming a My Health Story Friend or My Health Story Affiliate here: https://myhealthstory.com.au/mhs-friends/