30 minutes | Mar 30, 2023
Jessica 'Jess' Daigle, Pediatrician
Dr. Jessica “Jess” Daigle is a board-certified pediatrician, Nicu and pediatric hospitalist, and the Founder/CEO of Mom & Me MD, an in-home & virtual concierge practice in Atlanta designed to deliver 1:1 personalized care to newborns and their mothers during the 4th trimester to ease the transition home after birth. Dr. Daigle received her Doctor of Medicine at LSU School of Medicine New Orleans and completed her pediatrics residency at Morehouse School of Medicine, along with extra training in neonatal-perinatal medicine at the University of Maryland Medical Center. She is a former Medical Director at a Level 2 NICU at Wellstar Regional Hospital and currently works as a Locums pediatrician while building her businesses. She is a co-author along with 46 other female physicians in a book called “Made for More: Physician Entrepreneurs Who Live Life and Practice Medicine on Their Own Terms” available on Amazon and other book platforms. She has been featured on many different podcasts and is on the cover of this month’s issue of “Baby Whisper,” a parent magazine in Atlanta, Georgia. Dr. Daigle enjoys educating, advising, and reassuring moms, especially new moms and nicu moms. Interested in learning more about newborn and postpartum care? Follow her on Instagram @momandme_md.
31 minutes | Mar 17, 2023
Nthabeleng Paulette Ramoeli, Patient advocate
Ramoeli was born in Lesotho, a country encircled by South Africa, and lives with Ehlers-Danlos syndromes and many other comorbid conditions. This young woman relentlessly fights for improved access to health care for rare disease patients in her home country and shares the story of her path to the diagnosis of EDS diagnosis in the context of a place where healthcare resources cannot be taken for granted. She established an NGO to help all rare disease patients in Lesotho.
19 minutes | Mar 9, 2023
Andrea Anampa-Guzmán, Medical Student
Andrea Anampa-Guzmán was born in Lima, Peru. She is a medical student at Universidad Nacional Mayor de San Marcos. In 2017, she took a break from her medical studies to perform a research rotation at the University of Pennsylvania. In 2021, she became a permanent resident of the United States and moved to Buffalo, New York. She performs research for the Department of Medicine at the Roswell Park Comprehensive Cancer Center. Anampa-Guzmán is an assistant producer of the DEI shift, a podcast of the American College of Physicians (ACP). Nowadays, she volunteers for the Social Media Working Group of ASCO (American Society of Clinical Oncology). Additionally, she is part of the team of the Clinical Problem Solvers and the #HemOnc Fellows Network. She is interested in medical education, survivorship, global oncology, and lymphoma. Andrea Anampa-Guzmán has published over 25 research articles and numerous awards, including the MOLA-Michael Reese Foundation Scholarship, AACR Global Scholar-in-Training Award, and the ASCO Annual Meeting Research Award. Finally, Anampa-Guzmán is open about her experience living with Obsessive-Compulsive Disorder (OCD) and advocates for mental health, diversity, and equity. WEB PAGE: https://www.andreaanampag.com/ TWITTER: https://twitter.com/AndreaAnampaG LINKEDIN: https://www.linkedin.com/in/andreaanampag/
30 minutes | Mar 2, 2023
Naesha Parks, Patient Advocate.
Dr. Naesha Parks was born and raised in Thomson, Georgia. She has had a number of spiritual encounters, which have contributed to her strong faith and belief that all things are possible to those who believe. Her recent encounter left her with an amazing story that she believes was meant to bless the lives of others. Dr. Parks has twenty years of experience in Early Childhood Education and Leadership. She received her Bachelor’s degree in Elementary Education and her Specialist and Doctoral degrees in Educational Leadership. She is currently serving as an administrator in the Columbia County School System. When she is not working on behalf of her students, teachers and community, she spends her time with her family. Website: naeshaparks.com Facebook-HeartmatterswithDr.P Instagram-heartmatters_dr.p LinkedIn-Naesha Parks Twitter-@naesha_parks Podcast: Podcast streaming on all streaming platforms “Heart Matters Podcast”
42 minutes | Feb 23, 2023
Rob Long, Patient Advocate.
A suburban Philadelphia native, Rob is a former All-American punter at Syracuse and has lived the rare disease journey. In December of 2010, late in his senior season, Rob was diagnosed with anaplastic astrocytoma, a rare and aggressive form of brain cancer. His prognosis at the time was less than encouraging, and his surgery, recovery, and treatment took 16 months. Prior to his diagnosis, Rob was on a path to the NFL as a punter, but that opportunity was lost by the time he was healthy enough to train again. A graduate of Syracuse University, Rob pursued a Masters in New Media Management from the S.I. Newhouse School of Public Communications. He also received a B.S. from the Martin J. Whitman School of Management. Rob played football all four years for the Orange and was voted team captain by his teammates his final two seasons. He became the second Executive Director of Uplifting Athletes at the end of 2018. Uplifting Athletes website: www.upliftingathletes.org Twitter: @upliftingath Instagram: @UpliftingAthletes Facebook: Uplifting Athletes LinkedIn @Uplifting Athletes You can find him on social media @roblong47
19 minutes | Feb 17, 2023
Robin Powers, Patient Advocate.
Robin Powers is an expert in Ehlers-Danlos syndrome and other rare connective tissue disorders. She is a PCORI Ambassador, she is a seasoned advocate for rare diseases and patients with undiagnosed conditions and is also a motivational speaker. She is a researcher and biochemical pharmacologist, earning her degree at Buffalo State College in 2019.
29 minutes | Feb 10, 2023
Tim McLerran, Physician entrepreneur-turned AI software developer.
Tim McLerran is a physician entrepreneur-turned AI software developer with a mission to bring together human and machine intelligence in day-to-day clinical practice. He co-founded Medical Intelligence One to carry out that mission, and the company is currently building technologies and services that help people obtain diagnoses for rare diseases. The beta version of their rare disease search tool is available for patients and clinicians to try for free at https://www.mi1.ai/enola.
29 minutes | Feb 3, 2023
Vanessa Ferreira, patient advocate.
Vanessa Ferreira is a patient advocate who has committed more than 14 years of professional and personal commitment to patient associations in numerous countries and areas, such as rare diseases and cancer. She holds an MBA from Sorbonne University Paris and a Ph.D. in cell and molecular biology. She has one sister living with a rare disease called Congenital Disorders of Glycosylation (CDG). In 2022, she co-founded Humanized Solutions, whose mission is to support different stakeholders by implementing solutions co- created with the patient voice. She is interested in fostering sustainable collaborations and establishing patient-centricity as a norm for better health outcomes. Since 2021, she has been Chief Engagement & Alliances Officer at Buddy service App. From 2011- 2020 Vanessa worked in the pharmaceutical sector to speed up research and medicines development in coordination with patient groups. Vanessa Ferreira founded the Portuguese Association for CDG (APCDG) in 2010. In 2016 she implemented the World CDG Awareness Day and she co-founded CDG and Allies, the sole community- centric international research network for CDG. Vanessa's rigorous structure and successful approaches allow her to actively listen to what is essential to families and professionals, ensuring that all projects are co-created with the community. She has a proven track of scientific publications (~30 articles), focused on gathering insights with and for the CDG community. Everything she does is transferable across therapeutic indications. Vanessa initiated the World CDG organization in 2020 with various partners and CDG patient associations (worldcdg.org). She has represented patients in EURORDIS since 2010. She represents CDG as a member of the Steering Committee and Single Point of Contact (SPOC) of the European Reference Network for Hereditary Metabolic Disorders (MetabERN).
33 minutes | Jan 27, 2023
Dr. Neurofourier, healthcare expert
Dr. Neuro has 10+ years of experience of providing clinical, policy, and technical leadership for infectious diseases worldwide with the U.S. Government. In recent years, he has provided his support for the 2014 Ebola Outbreak, HIV/AIDS, Tuberculosis, Malaria, Zika, Monkeypox, and COVID. His focus is in bridging clinical evidence to actionable policy that targets highest risk populations and ensuring accessible/equitable access for all. During his off-time, he spends countless hours fighting misinformation/disinformation & answering questions on social media while encouraging evidence-based decisions for his community. Link: Twitter - https://twitter.com/Neurofourier/ Twitch – https://www.twitch.tv/dr_neuro
33 minutes | Jan 20, 2023
David Law, Physician and rare disease advocate
David Law is an internal medicine physician and hospitalist. He is also a musician, an award-winning filmmaker, and most importantly he is a rare disease advocate in honor of his daughter, Violet, who is diagnosed with a progressive neurologic condition, GM1 Gangliosidosis. He lives in Los Angeles with his wife, Dr. Veena Sison, a developmental pediatrician. Links The Cure GM1 Foundation: www.CureGm1.org A Cure for Violet Facebook Page: www.facebook.com/ACureForViolet GoFundMe: https://www.gofundme.com/f/a-cure-for-violet My Film page: www.3rdCallProductions.com "Code"- our award-winning short film on burnout: https://www.youtube.com/watch?v=d9y5yvPsTYw&t=18s
34 minutes | Jan 8, 2023
Diana Londoño, founder of Physician Coach Support.com
Dr. Diana Londoño is the founder of Physician Coach Support.com, where doctors can get free and confidential, peer led support over Zoom 7 days a week. She is a certified life coach and founded this platform to help her colleagues as burnout rates are at 60% or greater for many specialties. She received the Los Angeles Medical Association Physician Leadership Award for her work with Physician Coach Support. She is one of the few female Latinx urologists in the country making 0.5% of Urologists. She has experienced burnout twice herself and because of that, she writes and speaks passionately about wellness and humanity in medicine on social media and on television. She is the co-host of the live stream podcast “Supernova Sistas Physicians in Motion” in which the mission is to bring joy, positivity, and light to your day by discussing topics such as mindset, gratitude, self-care, connection, and integrating mind, body, and soul for optimal health. She says if Physician Coach Support.com can pull just one doctor from the brink of burnout, it is all worth it. Physiciancoachsupport https://dianalondonomd.com/ https://www.youtube.com/@dianalondonomd (4) Diana (Thorne) Londoño, MD | LinkedIn Diana Londoño, MD. Urologist, Life Coach. (@dianalondonomd) • Instagram photos and videos https://twitter.com/DianaLondonoMD https://open.spotify.com/show/0fTphUt6fh6s0VeuU8WjbV?si=5550d9be2ba24d8b&nd=1
41 minutes | Dec 19, 2022
Swapna Kakani, patient advocate.
Swapna Kakani is a nationally known speaker, and an award-winning advocate in rare and chronic disease healthcare delivery and the patient experience. Her life story shows audiences her individual resilience and self-determination in the face of constant difficulties, as well as the impact her healthcare advocacy has across disciplines. Swapna was diagnosed with the rare disease Short Bowel Syndrome at birth and for her entire 33 years has lived with nutrition through an IV and/or a feeding tube. In 2014, she had a small intestine organ transplant. Swapna through her platform, Swapna Speaks, has spoken across the world to several healthcare companies and associations motivating their leaders to make a difference within themselves and in their organizations to create and sustain valuable patient-and family-centered care across the care journey. Her recent presentations include the Cleveland Clinic Patient Experience Summit, the Healthcare Information and Management Systems Society (HIMSS) Conference, the Association for Vascular Access, and a TEDx talk. Swapna also does healthcare advocacy and policy work for the Short Bowel Syndrome/Intestinal Failure and broader rare disease communities in her home state of Alabama and nationally. In 2017, she founded Alabama Rare, a grassroots coalition to unite the state around the rare disease population, which has passed state bills and started educational initiatives for families affected by rare disease in the state. In 2021, she co-founded the gutsy perspective, a research initiative driven by members of the short bowel syndrome (SBS) community to investigate quality of life, and priorities, of patients with SBS and their families. The initiative published their first journal article in Journal of Pediatric Surgery in October 2021. Swapna, originally from Huntsville, AL, received her Bachelor's in Psychology and Master’s in Public Health from the University of Alabama at Birmingham (UAB). You can find Swapna on Facebook, Instagram, or Twitter @SwapnaSpeaks or on Linkedin at www.linkedin.com/in/Swapna Kakani www.swapnakakani.com Alabama Rare – www.alabamarare.org the gutsy perspective – www.thegutsyperspective.org
37 minutes | Dec 11, 2022
Orion Falvey, co-founder Orchid Health
After growing up in rural Southeast Alaska, Orion studied business and social entrepreneurship at the University of Oregon where he received the Oregon Student Impact Entrepreneur of the Year Award in 2013. While finishing school, Orion co-founded Orchid Health with the vision of creating a new model of primary care that better serves both healthcare professionals and patients alike. Over the past eight years, Orion has served as the visionary behind growing Orchid from 1 rural health clinic in Oakridge, Oregon, to a network of four integrated rural health and school-based clinics in some of Oregon’s most under-resourced communities. Early in his journey, it became clear that in order to best serve their communities, it was imperative that Orchid first redesign the healthcare workplace focusing on creating a healthy environment for team members. This resulted in Orchid shifting its primary focus from patient experience and population health to employee wellbeing and joy in work. The Orchid relationship-based care model has achieved success across the quadruple aim including being recognized as one of Oregon’s top places to work in 2021, averaging a 9.5 out of 10 when asking patients “would you recommend Orchid to family and friends”, achieving a 40% reduction in Medicaid ED utilization over a three year period at its first rural health clinic, and proving that it is possible for a relationship-based model of care where primary care providers see between 10 and 15 patients/day to be financially sustainable. Orion was named the 2020 Rural Health Hero by the Oregon Office of Rural Health and continues to be a vocal proponent for the need for a significant paradigm shift to occur in how healthcare organizations are structured and run to become more people-positive and complexity conscious. Orion lives in Portland with his partner and dog, loves going on van camping trips, and traveling back home to Southeast Alaska where he grew up.
29 minutes | Dec 4, 2022
Emily Parks, Patient Advocate
Emily Parks is a chronically ill young professional based out of San Francisco working in behavioral health and patient advocacy. Having been diagnosed with short bowel syndrome in infancy and unable to absorb nutrition orally, she was dependent on Parenteral Nutrition until receiving an isolated small bowel transplant from MedStar Georgetown University Hospital. Combining her expertise in behavioral health with her lived experience of navigating multiple tertiary hospitals firsthand has led her down the path of studying the impact of medical trauma and medical PTSD on patients and its influence on treatment outcomes. Emily founded the organization POP!, where she hosts patient lead discussion groups on all things medical PTSD related in an effort to learn what providers need to know about the mental health side of the patient experience.
36 minutes | Nov 27, 2022
Gary David, Professor Sociology at Bentley University in Waltham, Massachusetts
Gary David is a Professor Sociology and Experience Design at Bentley University in Waltham, Massachusetts. His work focuses on how to create experiences that bring people together to create a sense of connections and belonging. In experience design, he specializes in customer, user, learning, employee, and patient experiences. He also researches the design and use of technology for the workplace. Along with his teaching and research, he is the co-host of Experience by Design podcast (https://experiencexdesign), where they explore experience designs of all kinds. Finally, he is a professional keynote speaker and trainer for professional development (https://garycdavid.com).
43 minutes | Nov 20, 2022
Trevor Maxwell, Patient Advocate.
Trevor Maxwell, 45, has been living with stage IV colon cancer since March of 2018. He has undergone five major surgeries, chemotherapy, immunotherapy, and a clinical trial. He lives in Maine with his wife and two teenage daughters. In January of 2020, Trevor founded Man Up to Cancer, a purpose-driven company and support community that inspires men to connect and avoid isolation during our cancer journeys. MUTC is comprised of a podcast, website, annual retreat, chemo backpack program, and a Facebook group with nearly 2,000 men impacted by cancer. Trevor is writing a book scheduled to be independently published in December of 2022. Man Up to Cancer has partnerships with Seagen, CURE/MJH Life Sciences, Natera, Fight Colorectal Cancer, American Association for Cancer Research, GI Cancers Alliance, COLONTOWN, Global Colon Cancer Association, and Ancora AI. As a patient advisor, Trevor serves on advisory boards for Seagen, WCG Clinical, and Blue Note Therapeutics.
35 minutes | Nov 13, 2022
Sarita Edwards, Patient Advocate
Sarita Edwards is CEO & President at the E.WE Foundation, a nonprofit healthcare advocacy organization. She began her efforts of advocacy and public policy after her 5th child was diagnosed in utero with rare disease Edwards Syndrome or Full Trisomy 18. Sarita is recognized as a world's top patient expert and social health ambassador. She is an award winning advocate and host of the Being Rare Podcast, a digital resource hub and community conversations platform popular for its 60 second episodes. Sarita serves on executive boards and advisory councils within her home state and across the country. She is a rare disease legislative advocate, a member of multiple coalitions, and an active participant in DEIA workgroups. Sarita also serves as a Community Congress member providing advice and insight on urgent policy initiatives. Sarita has a Bachelor of Science is Health Science and is a candidate for her Masters in Healthcare Administration. She has professional experience in Healthcare Operations & Patient Access. Sarita has certifications in Seizure Recognition & First Aid from the Epilepsy Foundation and Mental Health First Aid from the National Council for Behavioral Health & Mental Wellbeing. Additionally, Sarita has continuing education studies in effective parenting, understanding childhood behavior, and child abuse & neglect prevention. Sarita lives in North Alabama with her husband and their five children.
61 minutes | Nov 6, 2022
Doug Lindsay, Patient Advocate
Doug Lindsay has spent the last two decades investigating and tackling rare, complicated medical conditions – first in himself and his family and now through his Personal Medical Consultant service. An innovator, Doug partners with clients and experts to make new things happen. He works to get clients who are stuck in the medical system unstuck. To aid him in his work, he strives to understand healthcare from all levels of organization, from the individual to health systems, public health, and global health. Doug’s dogged, indefatigable ability to chase down answers to an individual’s complex problems makes him a special asset as a teammate and Personal Medical Consultant. In addition to his Personal Medical Consultant service, Doug Lindsay • Co-chairs PCORI’s Congressionally-mandated Rare Disease Advisory Panel (RDAP) • Co-chairs Washington University School of Medicine’s Community Advisory Board for the Institute for Clinical and Translational Sciences and the Institute for Public Health (ICTS & IPH). • Is Community Advisory Board member for the National Institutes of Health’s ACTIV-1 IM trial. (ACTIV is the US government’s public/private/nonprofit collaboration for Accelerating COVID-19 Therapeutics and Vaccines research.) • Is member of the National Institutes of Health’s ten-person ACTIV COVID Biospecimen Prioritization Committee. (NIH) • Is member of Academy Health’s Global Health Interest Group. • TEDx talk Operation: Adrenal Gland can be found at TED.com • Was speaker in the panel kicking off Academy Health’s Datapalooza, 2019 • Has twice been an ePatient Scholar at Stanford Medicine X (2017, 2019) • Appeared on The Dr. OZ Show in fall 2019 as example of The Power of 1 (to make a difference). • Was the first patient invited to give a fireside chat for the Health Management Academy, which hosts C-Suite education conferences for the nation’s 100 biggest hospital systems, 2017. • Co-chaired aviation humanitarian nonprofit Wings of Hope’s “Taste of Hope” fundraiser • Has been keynote speaker for national organizations like AHIMA, for healthcare conferences like the Society for Participatory Medicine, and at internal corporate events for firms like Pfizer. • Graduated with honors from Rockhurst University’s Honors College with a BS in biology in 2016. • CNN online feature “This college dropout was bedridden for 11 years. Then he invented a surgery and cured himself” on his story was the #3 article globally across all media platforms for all of 2019 for time readers spent reading it.
45 minutes | Oct 31, 2022
Mike Rabow, Professor of Clinical Medicine and Urology at UCSF
Michael W. Rabow, MD, FAAHPM, the Helen Diller Family Chair in Palliative Care, is a Professor of Clinical Medicine and Urology at UCSF. He is the Associate Chief of Education & Mentoring in the Division of Palliative Medicine in the Department of Medicine, and the Medical Director of Palliative Care at UCSF’s Helen Diller Family Comprehensive Cancer Center (https://cancer.ucsf.edu/people/profiles/rabow_michael.3627). Board-certified in internal medicine and hospice & palliative care, Dr. Rabow directs a leading outpatient palliative care program-- the Symptom Management Service. In addition, Dr. Rabow is a member of UCSF’s Academy of Medical Educators and is the Founding Director of the MERI Center for Education in Palliative Care at UCSF/Mount Zion (https://meri.ucsf.edu). Dr. Rabow was the winner of the 2017 AAHPM PDIA National Palliative Care Leadership Award. He is a past recipient of the Soros Project on Death in America award and the Hastings Center Cunniff-Dixon Physician Award.
26 minutes | Oct 23, 2022
Jared Rubenstein, Doctor and Medical Educator.
Jared Rubenstein is a pediatric palliative care doctor and medical educator. He is passionate about using communication tools, creativity, and humor to help people talk about hard things. He lives in Houston, Texas, USA with his wonderful family. Youtube channel: https://www.youtube.com/channel/UCwzLhSI2v1ySPbU-LPTZzbQ And twitter handle is @DrJRubenstein