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The Health Design Podcast

Science Podcasts

The Health Design Podcast brought to you by the Journal of Health Design(www.journalofhealthdesign.com). Features interviews with the world's leading health design experts including clinicians, designers, patients, authors and researchers. Better health by design.

Location:

Australia

Description:

The Health Design Podcast brought to you by the Journal of Health Design(www.journalofhealthdesign.com). Features interviews with the world's leading health design experts including clinicians, designers, patients, authors and researchers. Better health by design.

Language:

English


Episodes
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Eric Fisher, Counsellor and Patient Advocate

10/31/2024
Eric Fisher is a Candian certified counsellor with over 13 years experience working in inpatient and outpatient treatment environments. Originally from the US, Eric specializes in helping those with addiction and trauma. He operates his private practice, Recovery Arts Counselling, in Calgary, AB.

Duration:00:24:54

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Risa August, patient advocate

10/24/2024
Based in Colorado, Risa August is an author, Speaker, Gestalt practitioner and Patient Advocate for rare pituitary diseases. She has been sharing her story for the past five years, and more recently in her memoir The Road Unpaved – Border to Border with a Brain Tumor and a Bike. In addition to speaking at conferences for leaders in pharmaceuticals, medical professionals, and patients, her work is published on blogs and in other smaller publications. Her most popular personal essay, “Marshmallow Clouds,” has been translated into Spanish. Through her personal transformation, Risa has learned and practiced removing limiting beliefs, shifting her perspective, and embracing a full life. Risa has a B.A. in geography, a certification in the Gestalt Coaching Method, and a certificate in mindfulness-based cognitive therapy. She has been living with a pituitary tumor and rare disease for over a decade and offering words of inspiration and information to audiences in hopes of saving others from heading down a bumpier road. A girl with sparkles in her hair and once an Ironman athlete, Risa still has a passion for her bike and barbells. With her genuine curiosity and love for trying new (and old) things, you may find Risa taking Bollywood or hip-hop dance lessons, trying a silks aerialist or boxing class, going indoor skydiving, or guiding an inspirational workshop in creativity.

Duration:00:28:18

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Rachna Rekhi, pediatrician

10/17/2024
Dr. Rachna Rekhi is a board certified pediatrician and lifestyle medicine physician. Prior to attending medical school she earned a degree in Food Science and Human Nutrition from the University of Florida. After university, she worked as a researcher in the Cardiology Department at Stanford University. She had aspirations of becoming a cardiologist until she attended medical school at McGill University in Montreal, Canada and had a revelation that many adult diseases begin in childhood. After that she focused her energy on becoming a pediatrician in hopes of influencing families to adopt healthier habits at a young age. She has worked at Kaiser Permanente, a large healthcare system, for 13 years. During this time she recognized that children are capable of making great choices about their health if they have the proper knowledge, and they need to be a part of the conversation about their health. She believes that children have the power to influence the adults in their life to be healthier. She co-hosts a podcast called Wellness Wizards with her 9 year old son and 11 year old daughter, where they discuss, simplify, and gamify lifestyle medicine topics including primarily plant based nutrition, physical activity, restorative sleep, reduction of risky substances, social connectedness, and stress reduction. She loves traveling and cooking healthy food with her children. Last year the family took a year off and traveled to 19 countries together, and since then they have made it a goal to travel to all 7 continents together. You can follow their channel at https://www.youtube.com/@wellnesswizardsofficial. You can also check out their audio podcast here: Spotify: https://open.spotify.com/show/0EFWUCmNamD6pLJimbOJxU?si=5de277020f3147ed Apple Podcast: https://podcasts.apple.com/in/podcast/wellness-wizards/id1713230846 Amazon: https://www.amazon.in/Wellness-Wizards/dp/B0CLKW18P1 Wellness Wizards Youtube Spotify Apple Podcast

Duration:00:29:00

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Melanie Brooks, Author & Patient Advocate

10/3/2024
Melanie Brooks is the author of the memoir A Hard Silence: One daughter remaps family, grief, and faith when HIV/AIDS changes it all (Vine Leaves Press, 2023) and Writing Hard Stories: Celebrated Memoirists Who Shaped Art from Trauma (Beacon Press, 2017) She teaches creative nonfiction in the M.F.A. program at Bay Path University and in the M.F.A. program at Western Connecticut State University and professional writing at Northeastern University. She holds an M.F.A. in Creative Nonfiction from the University of Southern Maine’s Stonecoast writing program and a Certificate in Narrative Medicine from Columbia University. She has had numerous interviews and essays on topics ranging from loss and grief to parenting and aging published in the The Boston Globe, HuffPost, Yankee Magazine, Psychology Today, The Washington Post, Ms. Magazine, Creative Nonfiction, and other notable publications. She lives in New Hampshire with her husband, two children (when they are home from university), and chocolate Lab. Website: https://www.melaniebrooks.com/ ‘A Hard Silence’ book from: https://shorturl.at/ipHQ4

Duration:00:30:06

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Megan-Claire Chase, Patient Advocate.

9/19/2024
Megan-Claire Chase, aka Warrior Megsie, is a patient advocate and breast cancer survivor from Atlanta, Georgia. Her blog, Life on the Cancer Train, is famous for being authentic, raw, and informative, with a twist of humor, where she shares her experiences of being a young adult cancer survivor while advocating for better treatments and resources. The blog is syndicated on Cancer Health Magazine's website. Megan-Claire is a highly sought-after blogger and influencer in the cancer community nationally and internationally. In 2023, Megan-Claire was featured in Stories from the Stage episode "Beyond Cancer," which aired on PBS and World Channel. Currently serves on Bayer Oncology's Digital Patient Council, and the Oncology Data Advisory Editorial Board, and is a Board Member for the LYTE Foundation. She hosts two podcasts, The Other Side of Cancer and Our BC Life, and ongoing collaborations with Teen Cancer America to create inclusive content for social media and patient-facing collateral. Megan-Claire co-authored abstracts and presented posters, including Genetic Testing in Metastatic Breast Cancer in the USA: A Podcast | Oncology and Therapy (springer.com), and The Impact of Triple-Negative Breast Cancer in Black Women at the San Antonio Breast Cancer Symposium in 2023, and "You don't really have a say in anything...like you don't have any options": AYA Cancer Survivors' Perspectives on Fertility Preservation Conversations with Healthcare Providers presented at the 16th Annual American Psychosocial Oncology Society (APOS) in 2019 and accepted for a Poster Symposia II: Sexual and Reproductive Health oral presentation at the annual meeting of the Society for Adolescent Health and Medicine and published in the medical journal Psycho-Oncology. Megan-Claire's work is featured in several publications, including Cancer Health, Cancer Today, CURE Magazine, Count Me In, Everyday Health, Elephants and Tea, Dating Roo (UK), Voyage ATL, Humor Beats Cancer, IHadCancer.com, RETHINK Cancer, Pharmaphorum (UK), and WebMD. Blog: Life on the Cancer Train at www.warriormegsie.com Social Media Links: Instagram - https://www.instagram.com/warriormegsie/ Twitter - https://twitter.com/warriormegsie LinkedIn - https://www.linkedin.com/in/megan-claire-chase/ Other Links to Projects/Articles: Stories from the Stage on PBS and World Channel episode: Beyond Cancer Watch here. Cancer Health magazine: You Can’t Escape Race in Cancer Read here. Oncology Data Advisor: AYA Cancer Awareness Week: Creating Welcoming Spaces for Support and Advocacy With Dr. Lauren Ghazal, Megan-Claire Chase, and Allison Rosen Listen here. The Patient Story: Megan-Claire's Breast Cancer Story: My Symptoms Were VERY Different Watch here Pfizer: Genetic Testing in Metastatic Breast Cancer in the USA: A Podcast | Oncology and Therapy (springer.com)

Duration:00:52:03

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Joy Rios, patient advocate and podcast host

9/5/2024
Joy Rios, MBA, stands as a distinguished Health IT strategist and a recognized expert in value-based care payment models. Celebrated for her pioneering spirit, Joy was awarded the 2023 HIMSS Changemaker of the Year award for her significant contributions to women in health IT, underscoring her commitment to diversity, equity, and inclusion in the healthcare sector. As founder and host of the "HIT Like a Girl" podcast, and the Like a Girl Media agency, Joy is dedicated to elevating diverse voices and advancing DEI initiatives within healthcare. Her expertise not only bridges gaps between health and technology but also champions the creation of equitable healthcare environments.

Duration:00:34:47

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Sean Wachter, patient advocate

8/23/2024
Sean Wachter's life is a remarkable narrative of resilience, determination, and transformation. After overcoming a life-changing accident, Sean faced a grueling health battle that led to the discovery of a golf ball-sized lesion in his cerebellum. Despite a challenging journey through misdiagnosis and the eventual confrontation with Stage 4 melanoma, including brain metastases and leptomeningeal disease, Sean's spirit remained unbroken. An accomplished former two-sport collegiate athlete and professional football player, Sean has channeled his relentless energy into professional wrestling, turning it into a platform for raising awareness and funds for cancer research. His return to the ring is not just a personal triumph but also a powerful gesture of defiance against his medical challenges. Beyond the ring, Sean's endeavors extend to significant charitable work. He collaborates with notable organizations like The V Foundation, the Melanoma Research Alliance, and Memorial Sloan Kettering Cancer Center, contributing to brand awareness and fundraising efforts. His journey is a poignant reminder of the power of resilience and the profound impact one can have in the face of adversity. Sean's story, highlighted by his remarkable return to professional wrestling, is a testament to the strength of the human spirit. He embodies the essence of not just surviving but thriving, inspiring countless others with his journey.

Duration:01:10:23

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Nancy Buermeyer, Director of Program and Policy at BCPP

8/8/2024
Nancy (she/her) is Breast Cancer Prevention Partners’ (BCPP) Director of Program and Policy and works at the state and federal levels to advance public policy to reduce exposures to toxic chemicals. Before joining BCPP, Nancy spent over 20 years in Washington DC advocating for numerous causes, including civil rights for women and the GLBTQ+ community. She graduated from the University of Pittsburgh with a Bachelor of Science in Biology and earned a Masters degree in Biological Oceanography from the University of Connecticut. Nancy is an avid outdoors person, spending her spare time hiking and birding in Northern California and beyond. In the 13 years Nancy has worked for BCPP, she has focused on several issues related to breast cancer prevention including strengthening the country's broadest law governing synthetic chemicals – the Toxic Substances Control Act; implementation of the ban on several phthalates in toys and childcare articles; and advocating for federal resources to support the National Institute of Environmental Health Sciences and environmental health programs at the Centers for Disease Control and Prevention, including the biomonitoring and health tracking programs. Her more recent experience has focused specifically on state legislative work, including BCPP’s co-sponsorship of legislation to remove toxic chemicals from plastic products, require the disclosure of ingredients in cleaning, and banning forever per- and polyfluoroalkyl substances (PFAS) from firefighting foams, paper-based food packaging, and textiles. Breast Cancer Prevention Partners is a science-based national organization working to eliminate toxic chemicals and other environmental exposures linked to breast cancer. You can learn more about Nancy, BCPP, and ways to get involved at www.bcpp.org. Find us on our various socials: Instagram: www.instagram.com/bcppartners X: twitter.com/BCPPartners YouTube: www.youtube.com/c/BreastCancerPreventionPartners TikTok: www.tiktok.com/@bcppartners LinkedIn: www.linkedin.com/company/breast-cancer-prevention-partners

Duration:00:24:58

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Jade Gibson, patient advocate

7/25/2024
Jade Gibson’s connection to cancer presented itself at the age of 16 when she was diagnosed with late-stage ovarian cancer. The experience ignited a desire to help individuals and families affected by cancer, leading her to pursue studies at the Harold P. Freeman Patient Navigation Institute. There she received education on the newly developing field and learned how to apply the navigation model to eliminate common barriers for patients moving through the healthcare system. To date, Ms. Gibson has entered her 19th year of survivorship – lending her voice to address disparities that plague historically marginalized AYA patients from rural communities. As a champion for cancer advocacy, she participates in interviews, virtual conferences, webinars, marketing research, and fundraising. Additionally, serving in the following capacities: • Committee member for the Georgia Cancer Control Consortium (GC3) Survivorship Workgroup and Georgia Prostate Cancer Roundtable Steering Committees. • Patient Centered Outcomes Research Institute (PCORI) - Adolescent Young Adult (AYA) Advisory Panel project focusing on identifying barriers to recruiting and engaging underrepresented adolescent and young adults in cancer survivorship research. • BVOGUE participant in the “Centering the Marginalized Voices of Black Patients with Gynecological Cancer as a First Step in Healthcare Curriculum Development,” study supported by MOQC (the Michigan Oncology Quality Consortium). • Ovarian Cancer patient expert with Merakoi, creating healthcare solutions to benefit people living with a chronic illness. • Citizen Scientist for the Ovarian Cancer Outreach with the “Connecting Families to Overcome Ovarian Cancer” study led by Emory University.

Duration:00:32:09

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Denise Wiseman, patient advocate.

7/11/2024
Denise’s career in healthcare began in a critical access hospital in Washington state and expanded to serve organizations large and small across the US. After working in non-profit and for-profit healthcare sectors and the last decade in patient experience, Denise is now working to Make a Ruckus That Makes a Difference in healthcare. She brings her expertise, passion for serving frontline leaders and employees, and entrepreneurial spirit to every conversation. Denise encourages those she works with to think differently, create synergistic collaborations, develop relationships and connections beyond their organizations and profession, and, of course, make a ruckus.

Duration:00:31:26

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Sammy Winemaker, palliative care physician

6/27/2024
Dr. Winemaker is a graduate of McMaster University Medical School. She has completed residency training in Family Medicine, and fellowship training in Palliative Medicine. Her clinical work is predominately community based, caring for people in their home. She is an associate clinical professor at McMaster University in the Department of Family Medicine, Division of Palliative Care. She has held multiple leadership roles including McMaster Postgraduate Curriculum Lead, Hospice Medical Director, Regional Palliative Clinical Lead and Medical Lead Palliative Care Outreach Team. She is an active educator and researcher. Most importantly, Dr. Winemaker is an advocate for palliative care reform. She believes strongly that basic principles of palliative care should be the responsibility of all health care providers and integrated into care seemlessly, upstream in the patient’s illness journey. She is the co-creator of the social movement called The Waiting Room Revolution, the co-host of the Waiting Room Revolution podcast, co-authour of the book Hope For The Best Plan For The Rest: 7 Keys for Navigating a Life-Changing Diagnosis, and very active voice on multiple social media platforms. She has won numerous awards for her leadership and palliative care education for health care professionals.

Duration:00:36:57

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Salih Hendricks, patient advocate

6/13/2024
Salih Hendricks is a South African Diabetes Amputee Advocate and shares his lived experience with many around the world on platforms like, DEDOC.org, WHO, IDF, Diabetes South Africa, Diabetes SA Advocacy, American Limb Preservation Society, Bromley Diabetes UK Peer Support Group. He is a Board Member of Diabetes South Africa and South Africa Diabetes Advocacy. He does Peer Support and motivational talks on awareness and prevention of diabetes complications and amputations. He is always promoting diabetes education with awareness and prevention. https://www.instagram.com/salihhendricks/ https://www.youtube.com/watch?v=pXrk-c_zXTU https://www.thewaytomyheart.org/ https://www.who.int/news-room/events/detail/2021/11/23/default-calendar/ncd-hard-talk-webinar-comprehensive-diabetes-management https://idf.org/what-we-do/advocacy/advocacy-networks/blue-circle-voices/bcv-stories/salih-hendricks-south-africa/ https://limbpreservationsociety.org/news/alps-features-salih-hendricks-a-diabetic-and-amputee-advocate/ https://www.diabetessa.org.za/dsa-news-autumn-2022/ https://www.diabetesadvocacy.org.za/board-members https://sweetlife.org.za/life-as-a-diabetic-amputee/

Duration:00:36:33

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Sharran Rouse, patient advocate

5/30/2024
Passionate. Unique. Loyal. Resilient. These words are commonly used to describe Sharron S. Rouse. Sharron is an experienced leader with a demonstrated history of working in the education and nonprofit industries. She is skilled in program coordination, leadership, community outreach, and curriculum development. A native of the Washington, DC Metropolitan area, she has dedicated her life to influencing the world as a kidney disease, dialysis, and now transplant survivor. Sharron actively shares her story to bring hope and healing to anyone facing difficult circumstances in life. In 2022, she started SR Consulting Services LLC to provide support and guidance to educational and healthcare businesses and organizations. To expand the scope of her reach, Sharron founded Kindness for Kidneys International, Inc., a nonprofit organization committed to educating, encouraging, and empowering kidney warriors and their families. With the support of the community, Kindness for Kidneys has gained national attention for their monthly support groups, kidney education program, and annual holiday drives. Sharron remembers what it was like to be on dialysis during the holiday season, which is why Kindness for Kidneys serves over 500 kidney warriors and counting each year. Their annual Holiday Drive has been featured on local ABC and NBC news outlets. Sharron has been a guest speaker for several national and international educational and business-related conferences. She currently serves on the NIH/NIDDK Safety and Monitoring Board for the System Interventions to Achieve Early and Equitable Transplants (STEPS) study, Women of Color in Pharma – TRUST Advisory Board, Quality Insights ESRD Network 5 Patient Advisory Council, Bayer FINE-ONE Standing Patient Council, Health Union Patient Leadership Council, and the Vertex Patient Advisory Board. As an ambassador for the American Association of Kidneys Patients (AAKP) and the American Kidney Fund, she has participated in many patient panel discussions, served as a guest speaker, exhibitor, and Co-Chair for the 2019 and 2020 AAKP National Patient Meetings, was a peer mentor for dialysis warriors at Emory University Hospital, and has represented the state of Maryland for Capitol Hill advocacy days in Washington, DC. Sharron’s hard work and devotion to serving the community has granted her numerous awards including the Presidential Volunteer Service Award in 2020 and 2022, Who’s Who in American Education recognition, Honorable Mention for the Lyfebulb/CVS Kidney Care Innovation Challenge, the AAKP Support Group of the Year award, the Second Chance Show’s Prima award, and the 2023 Health Union Community Cultivator award. Sharron lives in Maryland with her husband Shawn and daughter Kyla. Website: www.kindnessforkidneys.org

Duration:00:38:08

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Minas Chrysopoulo, Plastic surgeon

5/16/2024
Dr Chrysopoulo ("Dr C") is a board certified plastic surgeon, breast reconstruction surgeon and microsurgeon, and President of PRMA Plastic Surgery in San Antonio, TX. Dr C is certified by the American Board of Plastic Surgery and is an active member of the American Society for Reconstructive Microsurgery (ASRM), and the American Society of Plastic Surgeons (ASPS) for which he has served on several breast reconstruction educational committees. He has authored and co-authored several book chapters and scientific articles in peer-reviewed journals on breast reconstruction-related topics, and is routinely an expert speaker at regional, national and international academic meetings. Dr C has dedicated his professional life to advocating for breast cancer patients, and strongly believes that shared decision-making between the physician and patient is crucial in achieving the best treatment outcomes. To this end, he founded Toliman Health, a digital health company committed to helping physicians, healthcare organizations, and industry improve patient experience and outcomes via empowering shared decision-making technology. Toliman’s flagship product, the Breast Advocate® App, is the world's first shared decision-making app for breast cancer surgery and breast reconstruction. Breast Advocate® provides anyone with a breast cancer diagnosis, or at risk of developing breast cancer, a much-needed voice in their breast cancer surgery decision-making. Dr C also leads the Shared Decisions and Personalised Care Expert Group at the World Health Innovation Summit (WHIS). Connect with Dr C: Website: https://linktr.ee/drchrysopoulo Facebook: https://www.facebook.com/drchrysopoulo Twitter: https://twitter.com/drchrysopoulo LinkedIn: https://www.linkedin.com/in/drchrysopoulo

Duration:00:33:57

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Annie-Danielle Grenier, patient advocate

5/2/2024
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/

Duration:00:30:08

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Samira Daswani, Healthcare Strategy and Design Leader

4/18/2024
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.

Duration:00:30:55

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Shruti Mitkus, Director of Genetic Education and Navigation at Global Genes

4/4/2024
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/

Duration:00:32:30

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Estela Lugo, patient advocate

3/21/2024
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.

Duration:00:25:39

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Sarah Parker Ward, co-founder of We Are Clio

3/7/2024
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.

Duration:00:29:38

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Neilanjan Nandi, MD, Associate Professor of Clinical Medicine

2/22/2024
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.

Duration:00:39:05