Dr. Danny Sands is passionate about healthcare transformation. A practicing physician with training and experience in clinical informatics, Dr. Sands has worked in a variety of capacities in the healthcare IT industry for over 25 years. He spent almost 14 years doing clinical informatics at Beth Israel Deaconess Medical Center, where he developed and implemented innovative systems to improve clinical care delivery and patient engagement, including clinical decision support systems, an EHR, and one of the nation’s first patient portals. This was followed by leadership positions including Cisco, Zix Corporation, and others.

Dr. Sands is the recipient of numerous healthcare honors, including recognition in 2009 by HealthLeaders Magazine as one of “20 People Who Make Healthcare Better.” He is the co-author, with e-Patient Dave deBronkart, of Let Patients Help.

Dr. Sands has earned degrees from Brown University, Ohio State University, Harvard School of Public Health, and trained at Boston City Hospital and Boston’s Beth Israel Hospital.
Dr. Sands holds an academic appointment at Harvard Medical School and maintains a primary care practice at Beth Israel Deaconess Medical Center in which he makes extensive use of health IT—much of which he helped to introduce. In addition to practicing, Dr. Sands works with a number of innovative companies and is a co-founder and the chief advocacy officer of the Society for Participatory Medicine. He is a popular speaker and consultant, blogs at DrDannySands.com and tweets as @DrDannySands.

Danny Sands, chief advocacy officer of the Society for Participatory Medicine.

A 2nd generation prostate cancer survivor and advocate on proactive prostate cancer health. 

President and co-founder of the Prostate Cancer Awareness Alliance-DMV (PCAA-DMV) – a non-profit focused on helping men to – Get a GRIP on Prostate Cancer – through educational and informational interactive sessions highlighting prostate cancer treatment centers and cancer support services within the DMV. And through shared survivor stories.
Co-author on family prostate cancer book – “Prostate Cancer – a Family Affair”

Career spans over three decades in information technology as a Cybersecurity Officer/Enterprise Solutions Architect. 

Master martial arts instructor/practitioner for more than 49 years in seven styles. Currently teaching - Tang Soo Do, Tai Chi, and self-defense – Silver Spring, MD.
    Avid cyclist – averaging 50mi plus/week
    A father, son, and husband
    5-year proactive prostate cancer survivor – April 19th – second birthday on life.

To find out more about PCAA-DMV and Derrick A. Butts – https://pcaadmv.org

Derrick Butts, President and co-founder of the Prostate Cancer Awareness Alliance-DMV (PCAA-DMV)

Catherine Foot is Director of Phoenix Insights, a new think tank set up to transform the way society responds to the possibilities of longer lives. Phoenix Insights is part of The Phoenix Group, the UK’s largest long-term savings and retirement business. 
 
Catherine is a research and policy specialist in ageing and longevity, and from 2015 to 2021 was Director of Evidence at the Centre for Ageing Better, a charitable foundation funded by The National Lottery Community Fund, and part of the government’s What Works Network. Catherine has also held senior roles at the health and social care think tank The King’s Fund, and the medical research charity Cancer Research UK.

Catherine Foot, Director of Phoenix Insights

After suffering a stroke and dissecting three of the four arteries that supply blood flow to her brain, Pam Mace was diagnosed with Fibromuscular Dysplasia (FMD). There was no patient organization at the time, and Pam quickly learned there was a lack of knowledge and understanding of FMD. She applied her nursing knowledge and skills to raise awareness of FMD and to promote education. FMDSA was incorporated in 2003, and after volunteering with the organization for six years, she gave up her clinical nursing career to serve as the Executive Director of FMDSA. Pam successfully led the campaign to get FMD recognized as a rare disease, cause of stroke and aneurysms. Pam is personally responsible for bringing FMD experts around the world together and for helping to facilitate and support patient groups worldwide. In addition, Pam serves on the Steering and Publications Committees for the United States Registry for Fibromuscular Dysplasia. Pam has more than 20 years of experience working as a registered nurse, primarily in the emergency and trauma departments. She also has experience working in the Cath Lab, on a Critical Care Transport Team and in the Intensive and Coronary Care Units. 
Working with her advisory boards, Pam and her team transformed FMDSA from a "kitchen table" organization to the highly respected, global organization that it is today. They have built a network of volunteers, physicians, researchers, and rare disease resources worldwide. For the last 14 years, she has planned and coordinated the FMDSA annual meetings, which has included working with researchers to facilitate saliva collections, blood draws, and quality of life studies to further the research of FMD.

Pam Mace, 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.

Emily Parks, Patient Advocate

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

Dr. Neurofourier, healthcare expert

Dr. Molander is an emergency medicine physician with greater than 25 years in clinical care. She analyzes quality of care and is passionate about patient education. Dr. Molander became involved in the world of sepsis in 2007, initially training intensivists in Early Goal Directed Therapy. She served on her hospital Sepsis committee from 2009 to 2015. As chair from 2011 until 2015 she collaborated with fellow Sutter hospitals as they navigated through a new Electronic Health Record and a sepsis initiative serving the critical access hospital to the quaternary care center. She has served on the Sepsis Alliance board since 2018 and was recently their Chair of the Board of Directors. She co-authored a chapter on Sepsis for the American Medical Life Support textbook for Emergency Medical Services and has an updated edition coming out later this year. She is currently participating in a year long Digital Health Fellowship with the goal of optimizing communication amongst patients and providers.

Karin Molander, Emergency Medicine Physician

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

Tanisha Bowman, Death Doula

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

Terri Coutee, Founder DiepCFoundation

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.

Sarah Parker Ward, co-founder of We Are Clio

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/

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

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.

Samira Daswani, Healthcare Strategy and Design Leader

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

Minas Chrysopoulo, Plastic surgeon

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

Sharran Rouse, patient advocate

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.

Sammy Winemaker, palliative care physician

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.

Denise Wiseman, patient advocate.

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.

Jade Gibson, patient advocate

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

Nancy Buermeyer, Director of Program and Policy at BCPP

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.

Sean Wachter, patient advocate

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.

Joy Rios, patient advocate and podcast host

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)


Megan-Claire Chase, Patient Advocate.

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/uHFLS

Melanie Brooks, Author & Patient Advocate

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

Rachna Rekhi, pediatrician

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.

Risa August, patient advocate

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.

Eric Fisher, Counsellor and Patient Advocate

Lori Abrams has been a consultant for the past year and a half, helping Organizations accomplish representation in their clinical trials.  This has been achieved by developing patient and community focused Diversity Strategy Action Plans, incorporating the patient and caregiver’s voice into decision-making, and bringing tangible solutions to the visible and invisible barriers that prevent representative recruitment and retention.

Her last role was Vice President of patient advocacy and clinical research diversity at WCG.  Abrams and her team worked to ensure that each clinical trial enrolled a diverse group of patients from underserved populations by facilitating culturally appropriate dialogue between patients, care providers, community members and trial stakeholders. The feedback and interactions from these groups garnered significant recommendations for the sponsors, but importantly, empowered diverse community members. The Team also worked with several pharmaceutical companies to develop Diverse Strategy Action Plans both for the Sponsor and the sites.
As the Director of Advocacy, Diversity & Patient Engagement in Global Development Operations at Bristol-Myers Squibb (BMS) she has built a Team that developed innovative and unique advocacy approaches that brought BMS clinical trial awareness and accessibility to patients, physicians, and caregivers. The Team also developed many relationships with minority-focused health and community-based organizations, to increase diversity in BMS clinical trial populations.  The Team also focused on educating the internal BMS workforce on the barriers, concerns and daily life of patients and caregivers.  This was achieved through quarterly “Voice of the Patient” seminars, art shows by patients, patient videos and internal teleconferences where colleagues could ask the Team questions.
 
Lori came to Bristol-Myers Squibb in 1998 as a Sr. Clinical Scientist in the Virology Group.  During her first six years she was the Clinical Working Group Lead on both Videx EC and Reyataz.  She joined the Drug Development Learning & Collaboration Team in 2003 managing a team of learning professionals.  
 
Prior to joining BMS, Lori was both a study coordinator in HIV/AIDS related clinical trials and a patient advocate at the National Institutes of Health and the Henry M. Jackson Foundation for Military Medicine.  Lori partnered with many patient advocacy organizations to bring the plight of the military’s HIV program to the public and integration into the HIV/AIDS overall arena.  Additionally, she successfully lobbied Congress to gain support for the military’s HIV Program and obtained an increase in funding of 20 million per year.  Her work was recognized with a nomination by Congressman Steny Hoyer (House Majority Leader) to be a delegate to the White House Conference of HIV/AIDS, and an award on World AIDS Day by Congresswomen Constance Morella. 

Lori completed her undergraduate studies at the University of Maryland and received a Graduate Certificate in Organization Development from the NTL Institute for Applied Behavioral Sciences.

Lori Abrams, patient advocate

Sjögren's Syndrome patient and patient research partner for rheumatic diseases.

Rebecca Anson, patient and patient research partner

Epiphany Jordan, MPH, CPH, is on a mission to rebrand human touch. From 2013-2020, she provided platonic touch therapy in a ritualized setting with her business, the Austin-based Karuna Sessions. She is also the author of Somebody Hold Me: The Single Person's Guide to Nurturing Human Touch. Somebody Hold Me addresses the touch deficit singles face, and offers multiple solutions. She has appeared on several podcasts discussing human touch, and spoke about solving loneliness with human touch at Austin’s SXSW Interactive Festival in 2019. In 2023, she completed her Master of Public Health with a concentration in Social Marketing from the University of South Florida, and researched rebranding human touch as part of her program. She has been a journalist, a legal assistant, an event planner, a professional tarot reader, an advice columnist, a cigarette girl, and a gig economy serf.

http://www.nurturinghumantouch.com
Twitter: @karunasessions
IG: somebody_hold_me
FB: https://www.facebook.com/karunasessionsatx
https://www.facebook.com/somebodyholdme/

Epiphany Jordan, author on a mission to rebrand human touch.

Author of the book ' The Waiting Room Cure.' 
Speaks with Moyez Jiwa about the impact of the interior design of medical facilities on outcomes in healthcare.

Cheryl Janis, Designer and host of the Healthcare Interior Design 2.0 podcast.

Dr. Sunita Puri is the Medical Director of the Palliative Medicine Service at Keck Hospital and Norris Cancer Center of the University of Southern California, where she also serves as Chair of the Ethics Committee. Sunita is the author of That Good Night: Life and Medicine in the Eleventh Hour, a critically acclaimed literary memoir examining her journey to the practice of palliative medicine, and her quest to help patients and families redefine what it means to live and die well in the face of serious illness. Sunita received writing residencies at the MacDowell Colony, UCross Foundation, and Mesa Refuge, and was a finalist for the PEN Center's Emerging Voices Writing Fellowship. The recipient of a Rhodes Scholarship, her writing has appeared in the New York Times, the Los Angeles Times, Slate, and the Journal of the American Medical Association. In 2018, she was awarded the Etz Chaim Tree of Life Award from the USC School of Medicine, awarded annually to a member of the faculty who, in the eyes of the campus community, models and provides humanistic and compassionate care.

Sunita Puri, Medical Director of the Palliative Medicine Service at Keck Hospital

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.

The Health Design Podcast

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