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Benjamin F. Miller, PsyD, is the President of Well Being Trust who oversees the implementation of the foundation’s strategies, full portfolio of investments, and partnerships. Dr. Miller’s previous role as Chief Strategy Officer of Well Being Trust ensured alignment across the foundation’s grants, research, partnerships and policy recommendations. …
 
Theresa Brown, RN is the author of the New York Times bestseller The Shift and Healing: When a Nurse Becomes a Patient. She has been a contributor to the New York Times, CNN.com, the American Journal of Nursing, the Journal of the American Medical Association, and the Pittsburgh Post-Gazette. She has been a guest on MSNBC Live and NPR’s Fresh Air. …
 
Michelle Litchman, PhD, FNP-BC, FAANP, FADCES, FAAN is an Assistant Professor at the University of Utah College of Nursing, Adjunct Assistant Professor of Internal Medicine, and Nurse Practitioner at the Utah Diabetes and Endocrinology Center. She serves as the Medical Director of the Intensive Diabetes Education and Support Program at the Universi…
 
Danny van Leeuwen, Opa, MPH, RN, a two-legged cis-gender, old white man of privilege, wears many hats in healthcare. He’s known as Health Hats – an action catalyst, patient-caregiver activist, a person with disabilities from Multiple Sclerosis, care partner to several family members’ end-of-life journeys, a registered nurse for over 45 years, infor…
 
Tristan Bilash (he/him/human) is a clinical oncology social worker, writer, speaker, Stage 3C ovarian cancer survivor, ADHD thriver, transgender man, and inclusive health advocate. Tristan has presented at numerous provincial and national conferences in Canada, including being a keynote speaker for the Canadian Association of Psychosocial Oncology …
 
Ashley Randolph saw a strong need to change the conversation when it comes to how Black NICU Families are treated in the NICU, at home and in school. Systemic racism is prevalent in every setting for these families and sets the stage for a vulnerable infant to grow into a child witnessing healthcare, therapeutic and educational environments that ar…
 
Maram is recognized nationally, locally, and statewide for her work. She received the 2019 Diversity Health Care Leader from the National Diversity Council. She was awarded the Ascendant Award from Leadership Austin. She has demonstrated community stewardship that exhibits the core values of Leadership Austin: Community Trusteeship, Inclusiveness, …
 
Retired U.S. Navy, Operation Desert Storm; Enduring and Iraqi Freedom veteran and 10 year hereditary colon cancer WARRIOR. My purpose is to educate the medical community about AFAP, continuing the legacy of Dr. Henry T. Lynch, on the importance of early detection in hopes of saving lives. Dr. Lynch is credited w/discovering AFAP. He's the founding …
 
Harry Glorikian is a global business expert, healthcare entrepreneur, podcaster and author of The Future You: How Artificial Intelligence Can Help You Get Healthier, Stress Less, and Live Longer (Brick Tower Press, Oct. 2021). For over three decades, Glorikian has built a breadth of successful ventures in the healthcare space, and he is well known …
 
Alastair Santhouse is a Consultant Neuropsychiatrist at The Maudsley Hospital in London. He began his career working in internal medicine, retraining in 1996 as a psychiatrist. He worked as a consultant psychiatrist for 18 years in Guy’s Hospital, London, at the interface between medicine and psychiatry, before moving into neuropsychiatry. He is a …
 
Dr. Yan Leyfman has been recognized as one of the top international researchers in oncology by the American Society of Hematology and American Society of Clinical Oncology (ASCO). He has contributed to the development of several anti-cancer therapies that have recently entered clinical trials and new treatment recommendations of care. His successes…
 
Karen Ranus served as Executive Director of the Austin affiliate of the National Alliance on Mental Illness (NAMI) for more than eight years until recently taking a position as Vice President of Impact for Lucero Speaks, helping launch a healthtech brand start-up focused on addressing youth mental health upstream before crisis. She sits on the Boar…
 
Annie Brewster is an Assistant Professor of medicine at Harvard Medical School, a practicing physician at Massachusetts General Hospital, in Boston, a writer and a storyteller. She is also a patient, diagnosed with Multiple Sclerosis in 2001. In response to the disconnection she experienced in healthcare, both as a patient and a provider, and motiv…
 
David Ross is a patient advocate and rare disease male mental mental health collaborator. David's activism began in 2017 when he was diagnosed with a rare disease called Cowden Syndrome due to being given a letter from his mother about getting tested before she passed away due to having the same condition. After a period of coming to terms with thi…
 
Julia Maués was diagnosed with breast cancer in 2013 while pregnant. Following the birth of a healthy baby boy, Julia did tests she couldn’t do while pregnant and discovered the cancer had spread to her brain, liver, and bones. After many treatment setbacks, her cancer began to respond to treatment. After adjusting to this new reality, she made it …
 
John-Manuel Andriote has written about health and medical issues since the mid-1980s. He has specialized in reporting on HIV-AIDS since earning a master’s degree in journalism from Northwestern University in 1986. Kirkus Reviews called his award-winning University of Chicago Press book VICTORY DEFERRED: How AIDS Changed Gay Life in America “the mos…
 
Gabe Charbonneau, MD is a rural family physician and high-tech entrepreneur. He is the co-founder of Fluent Systems, an EHR automation software company. He serves as EHR faculty at Practicing Excellence, and has been a physician advisor to the AI scribe companies, Tenor and Saykara. He is also the passionate creator of the #FightBurnout movement on…
 
Cynthia lives in Lawrenceville, NJ with her husband John. She attended Rutgers University graduating with degrees in Psychology and Education. Upon graduation she secured her first teaching position and immediately fell in love with her chosen profession. Cynthia continued teaching for 28 years. Cynthia, a myeloma survivor, was forced to retire fro…
 
Patient Advocate, Interdisciplinary Artist, Innovation Consultant Devoted to Connection and Repair. Liza Bernstein, a Third Culture Kid who is NED (No Evidence of Disease) after three cancers is a patient advocate, interdisciplinary artist, and innovation consultant devoted to connection and repair. Liza Bernstein's advocacy serves a global audienc…
 
At age 43, Sheila Marie Johnson — a retired Air Force Senior Master Sergeant and mother of one was diagnosed with stage IV HER2-positive, hormone receptor-positive breast cancer in December of 2009. Since being diagnosed with metastatic breast cancer, Sheila has undergone many aggressive treatments including a bilateral mastectomy and many rounds o…
 
Dave Craig is a two-time cancer survivor, oncology researcher and patient experience champion. After 10 years of struggling to see his own cancer journey in the patient experience research he led for the pharmaceutical industry, he left to use his survivor heart and researcher brain to help other patients. In 2016, he co-founded GRYT (“grit”) Healt…
 
Dr. Jones is an assistant professor in the Cancer Prevention Program, Public Health Sciences at Fred Hutchinson Cancer Research Center. She has a Doctor of Philosophy degree in psychology from the Ohio State University and completed post-doctoral training in aging and women’s health research at Group Health Research Institute (now Kaiser Permanente…
 
Rene Morales is patient advocate for Trigeminal Neuralgia (TN), a rare chronic pain condition that affects the trigeminal nerve, which carries sensation from your face to your brain. TN pain is exceptionally severe and at one time was referred to as the “Suicide Disease” because those with TN would rather end their life than live with the pain asso…
 
Julie Flygare, J.D., is a leading ambassador for narcolepsy and sleep, and a strong advocate for patient-centered research and the importance of social support. She is an accomplished speaker, Stanford Medicine X ePatient Scholar, and the award-winning author of Wide Awake and Dreaming: A Memoir of Narcolepsy. As President & CEO of Project Sleep, J…
 
Julia Maués was diagnosed with breast cancer in 2013 while pregnant. Following the birth of a healthy baby boy, Julia did tests she couldn’t do while pregnant and discovered the cancer had spread to her brain, liver, and bones. After many treatment setbacks, her cancer began to respond to treatment. After adjusting to this new reality, she made it …
 
Lara manages coordinated medical collaboration, raising funds for research, and focusing on the global progression of EDS and HSD. She speaks at conferences all over the world, lecturing to medical students and professionals, and supports specialists in the field by offering her experience as a leading Patient Expert. Commemorating ten years in the…
 
Leah Barett, MS, LCSW is a Psychotherapist and Nutritionist in Private Practice in Colorado. That is what she does, not who she is. She is a philosopher, nature-lover, sunset chaser and lover of beauty which she strives to see even in the darkest of places. She has a Ph.D. in being human which she gained from living with end-stage ovarian and breas…
 
Ella Balasa is a patient advocate, consultant, and a person living with cystic fibrosis. She was diagnosed at 18 months old and has experienced countless hospitalizations since being a child. She has committed her time to empowering patients and advancing research and healthcare strategies through her connections with researchers, pharmaceutical co…
 
C. Glenn Begley MBBS (MD-equivalent), PhD, FRACP, FRCPA, FRCPath, FAHMS is a physician and hematologist/medical oncologist, with a PhD in cell and molecular biology.He currently serves as an independent biotechnology consultant, and is Head of Biology at California-based BridGene Biosciences, and co-Founder and Head of Discovery at Boston-based Par…
 
Ace Robinson is a leading administrative and policy Communicable Disease advocate and population health expert. He serves communities disproportionately impacted by HIV, COVID-19, tuberculosis, malaria, and associated illnesses. Ace currently serves as the Chief Mission Officer at the Covid Clinic, a national non-governmental organization created i…
 
Aubrey is a patient advocate for TTR Amyloidosis, a rare condition for which he was diagnosed in 2013 with the hereditary type strain. Aubrey takes pride in providing support to other amyloidosis patients despite the trauma and challenges he faces as a sufferer. His extraordinary commitment to making a positive change in diagnosis and treatment all…
 
When Effie’s son, Ford, was born with an extremely rare genetic condition called CTNNB1 syndrome, she dove headfirst into the world of advocacy. CTNNB1 syndrome is caused by a deletion, partial deletion, or mutation of the CTNNB1 gene. It is a neurological condition that can cause a range of symptoms from mild developmental delays to severe physica…
 
I was born with PFFD (proximal focal femoral deficiency) in 1976. At the time, there were only 12 other documented cases in the world. At 2, we moved to the US to give me the best chanceto live out my potential. I had years of physical therapy and terrificdoctors, who helped set the groundwork that I could build on. My parents fought to get me into…
 
Joe Sooch here. I have a rare disease called FOP where my muscles turn into bones literally I was born with all my limbs working normally with free range. As I get older, I’ll get swellings all over my body and bones just start forming the bones grow and locks my body into place permanently. I can get surgery or more bones will grow. My DNA is faul…
 
Michelle and Tracy have been interprofessional leaders, friends and colleagues for over 30 years. They are co-hosts of a top healthcare leadership podcast, Healthcare’s MissingLogic Podcast. Michelle and Tracy have a combined experience of more than 60 years working as consultants and coaches for healthcare organizations across North America suppor…
 
Mary Donovan is the Assistant Dean for Standardized Patients (SPs) & Experiential Learning at Georgetown University School of Medicine in Washington, DC. She has served at Georgetown as administrative director and educator for the Integrated Learning and Simulation Center since 2007, providing medical students with clinical learning and assessment …
 
In 2018 Brad Power was a process innovation researcher and consultant with over 35 years experience and an author of over 75 articles for the Harvard Business Review when he was diagnosed with lymphoma. Brad went through a standard course of chemotherapy, which was successful, and he currently has no evidence of disease. While attending a conferenc…
 
Nikki Montgomery is the executive director of Madvocator Educational & Healthcare Advocacy Training and the author of the Super Safe Kids patient safety book series. Nikki is a patient advocate, a former hospital Board member, and the past president of the Patient and Family Partnership Council at University Hospitals Rainbow Babies & Children’s Ho…
 
Gunnar Esiason is a cystic fibrosis and rare disease patient leader, who is passionate about early stage drug development, patient empowerment and health policy. He is a Master of Public Health candidate at the Dartmouth Institute for Health Policy and Clinical Practice. Gunnar holds an MBA from the Tuck School of Business at Dartmouth and a BA fro…
 
Jamia is an educator, a connector, an advocate, as well as a “doer”. She is also a Multiple Sclerosis patient, national speaker, and blogger; is often regarded as a healthcare innovator with a keen desire to design a truly patient centered healthcare model that includes a leveled playing field. In her new role as CEO of Families Forward Virginia, s…
 
Sneha graduated from Indiana University in May 2020 where she majored in chronic illness advocacy as well as journalism. She created the Health Advocacy Summit (HAS) and its program the Crohn’s and Colitis Young Adults Network (CCYAN) with support from foundations such as the Helmsley Charitable Trust to create support systems for adolescents and y…
 
Shazia Ahmad, Senior Director, Head of Patient & Physician Services at UBC, earned a B.S. in physiology and neurobiology from the University of Maryland and has 20+ years of experience in the therapeutic development industry. Shazia is a seasoned thought leader in the rare disease space with a passion for ensuring the patient journey and diagnostic…
 
Elizabeth Jameson is an artist and writer who explores what it means to live in an imperfect body as part of the universal human experience. Before her diagnosis of multiple sclerosis, she served as a public interest lawyer representing incarcerated children; she later represented children living with chronic illnesses and disabilities in their att…
 
Cynthia Ryan is the Executive Director of the Vestibular Disorders Association (VeDA), the leading international organization people turn to for help with vestibular (inner ear and brain) disorders. VeDA helps people with vestibular disorders by connecting them to health care specialists and support networks. VeDA promotes awareness for vestibular …
 
Dr Gyles Morrison is a Clinical User Experience Specialist and Digital Health Consultant, improving the usability, accessibility and satisfaction people have with healthcare technology. He uses knowledge and experience of behaviour change to improve the way technology is successfully used in healthcare. He has worked with the NHS and a variety of h…
 
Johan is an extroverted, loving , family guy. When Johan turned 33 years old his world was turned upside down. Before his illness, Johan felt like he was on top of the world. He had a successful career, had just bought a house, and was planning a wedding with the love of his life. Then, on April 18th, 2019, he woke up and the world was spinning. Hi…
 
Dr. Ankita Sagar is an Internist, Primary Care Physician. She is an Associate Professor of Medicine at the Zucker School of Medicine at Hofstra/Northwell. She is the Director of Ambulatory Quality for the Medicine Service Line and currently serves as the Director for the COVID Ambulatory Resource Support Program at Northwell Health. She a member of…
 
Rob Andrews is an Associate Professor at the University of Exeter, an Honorary Consultant Physician at Musgrove Park Hospital Taunton and a Danish Diabetes Academy visiting Professor. At the University Rob he leads a group that conducts clinical trials to determine how best to help people with type 1 and type 2 diabetes to improve their diets, incr…
 
Leah Barrett is a Licensed Clinical Social Worker and Master’s Level Nutritionist and has been Private Practice for 25 years. She also has worked in medical settings, specifically oncology as well as consulting for nonprofits and teaching at Colorado State University’s School of Social Work. Most recently, Leah has been living with advanced breast …
 
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