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.

Nthabeleng Paulette Ramoeli,  Patient advocate

Becky Sansbury, M.Div., has spent thirty-five years focused on crisis care, working with individuals and organizations. Serving as head chaplain for Transitions LifeCare, a hospice and palliative care agency, she provided hands-on spiritual and emotional support for patients, families and colleagues. Simultaneously, she learned principles of dealing with crisis from an organizational perspective due to the intense team interaction required in hospice work. Becky followed that career with leadership in The Avadon Group, specialists in career crisis, working with displaced professionals during the 2008 recession.
Distilling underlying principles of crisis response, stabilization, and resilience within multiple areas of disruption, Becky developed the After the Shock™ process. She speaks to national organizations, such as Blueprint Medicines, Fisher House Foundation, and Ronald McDonald House Charities®, providing them with fresh perspectives and new tools to supplement their work with individuals and organizations in crisis. In addition, Becky consults directly with medical and corporate leaders when personal or professional crisis disrupts their work.
Becky’s book, After The Shock: Getting You Back On The Road To Resilience When Crisis Hits You Head On, was published in paperback and digital versions in 2015.

Shortly after the book was published, Becky needed to use her own process. For five years Becky provided in-home, solo caregiving for both her elderly mother and adult daughter. 

That experience reinforced Becky’s dual conviction that regardless of the diagnosis, all good care is palliative and the greater the shock, the more crucial the need for comfort. Her mantra has become, palliative care for all people all the time.

www.BeckySansbury.com

Becky Sansbury, patient advocate

Christina Cummins (she, her. hers) owns a private practice and consulting agency that offers therapy services and training programs for staff development. She has been in the healthcare field for over ten years, and for most of that time, her focus has been on mental health treatment and leadership. Christina is passionate about helping progressive healthcare organizations reduce burnout and develop leaders at all levels. She also assists organizations in providing trauma-informed care that promotes diversity, equality, and inclusion. Christina believes that increasing skills in healthcare leaders reduce turnover, vital in preventing further trauma to the vulnerable populations they serve

Christina Cummins. Cummins Counseling.

Erik Cardenas is Co-Founder & CEO at Zócalo Health, a digital health company committed to providing a premier family medicine experience that is tailored for the Latino community. 

In his 20+ year career, Erik has assumed various leadership roles for companies like Amazon, Everlywell, and Tenet Health. In March 2021, he was appointed to Rogers Behavioral health Board of Directors. Erik is an advocate for proper representation in leadership, recognizing the numerous benefits that minority leaders bring to the table for their communities. He actively promotes the inclusion of women and people of color in leadership roles, and is committed to building a more equitable healthcare system.

Website:  https://zocalo.health

Erik Cardenas, CEO at Zócalo Health

Patricia Weltin is the CEO/Founder of Beyond the Diagnosis, a traveling art exhibit that unites art and science to inspire research and innovation of treatments for people living with rare diseases. Artists paint portraits of children living with a rare disease; the portraits then become part of a traveling exhibit for medical schools, research institutes, hospitals, museums, and art galleries around the world. 
 
Patricia is the mother of two children living with Ehlers-Danlos Syndrome (EDS), a rarely diagnosed, multi-systemic connective tissue disorder. Her work as CEO of Beyond the Diagnosis led Patricia to make connections among many rare diseases, notably the prevalence of Tethered Spinal Cord (TSC) in the rare population. Patricia, a citizen scientist, was recently published in the American Journal of Medical Genetics.

Patricia Weltin, patient advocate

Dr. Jim Feng is a visionary entrepreneur dedicated to revolutionizing the healthcare industry through innovation and technology. With a passion for improving human performance and well-being, Dr. Feng has made significant strides in the field of integrated health models and disruptive healthcare technologies. Driven by his deep understanding of healthcare and affinity for technology-driven enterprises, Dr. Feng has successfully incubated multiple start-ups focused on disruptive healthcare technologies, content aggregation, and real-time language translation. Recognizing the challenges in the physical injury and insurance industry, he recently established Phyxable Inc. This groundbreaking virtual pain and prevention platform employs machine learning, augmented reality, and gamification to guide individuals out of pain while empowering them to achieve optimal human performance. In addition to his esteemed chiropractic degree, Dr. Feng is a Certified Strength & Conditioning Specialist and Medical Acupuncturist. His expertise has led him to direct medical teams for prestigious events such as world championships, professional sports, and Olympic-level competitions in MMA and Wrestling. Beyond his professional accomplishments, Dr. Feng finds fulfillment in high-performance individual sports, embarking on extreme adventures, exploring health-tech and lifespan solutions, and pursuing his passion for Aquascaping. He is a firm believer in giving back to the community and actively contributes to causes that truly matter. With his relentless pursuit of innovation, commitment to improving lives, and exceptional leadership skills, Dr. Jim Feng continues to shape the future of healthcare, inspiring both colleagues and aspiring entrepreneurs alike.

Jim Feng, healthcare entrepreneur

Short Bio 
Kimberly Reyes is a veteran educator, historian and trained political scientist. She has nearly 2 decades of experience in early childhood and primary education. Fluent in 4 languages, her parenting and educational philosophies pull from both Eastern and Western traditions. She is a mother of a toddler born at 26 weeks, speaking often on the NICU experience and other challenges facing parents whose journey has been anything but ordinary. 
She can be reached at: www.alltheunexpected.com

Kimberly Reyes, patient advocate

I am a professor of Genetics and Oncology at Memorial University, Newfoundland and Labrador (Canada). My main interests are identifying social and medical outcomes of cancer patients and their predictors (including demographic and biological markers). In the last few years, I also become interested in patient-oriented research and public engagement. I lead the Public Interest Group on Cancer Research that consists of cancer-affected public members as well as cancer scientists. This group designs studies and public outreach activities, including public conferences. It is quite an active local cancer advocacy group as well. In addition, I am a member of Atlantic Cancer Consortium and have roles in organizations/committees with an aim of addressing the issues faced by cancer patients and family members. Help controlling cancer and its effects on the population is very important for me. By doing all of these – that is research, public outreach, advocacy, and committee service, I believe that I contribute to positive change, better studies, effective advocacy, and genuine public outreach that will eventually lead to better survival outcomes, experiences and conditions for cancer patients.

Sevtap Savas, Professor of Genetics and Oncology

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

Soula Mantalvanos
Artist, designer and gallerist.
Advocate for the better quality of care, founder of My Health Story.

Soula combines her years of living with chronic pain and her professional creative communication experience to advocate for a better quality of care.

In addition to presenting at medical conferences, Soula has self-published a book, appeared in an award-winning documentary and established the website pudendalnerve.com.au. Soula offers her personal story on the website and found resources to help with the endurance and treatment of chronic pain.

Soula's most outstanding achievement is founding My Health Story, an engaging, safe and innovative way for patients to generate and store their personal health experiences.

My Health Story (founded as PainTrain – My Health Summary) initially concentrated on pain management. However, founder Soula Mantalvanos realised she could expand her novel health summarising idea to help people with other chronic health conditions such as Stroke, Dementia and aged care.

pudendalnerve.com.au
myhealthstory.com.au
Design portfolio ooi.com.au

Learn more about becoming a My Health Story Friend or My Health Story Affiliate here: https://myhealthstory.com.au/mhs-friends/

Soula Mantalvanos, patient advocate

Charles Gellman is the Chief Patient Advocate of HiDO Health. His expertise is in clinical informatics and data analysis which accelerates the understanding of health data to improve health outcomes. HiDO research is focused on reducing home medication errors, avoiding unnecessary hospitalizations and saving billions of healthcare dollars. Together health care can enhance transparency to all providers that enables better patient care and equal access to care for all people. 

HiDO Background Information
https://us.hidohealth.com/about

YouTube Channel
https://www.youtube.com/channel/UCS-E9J74PeAT0ioieZOZBEQ

Charles Gellman, Chief Patient Advocate at HiDO Health

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

Christina Gagnon, Patient Advocate

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Kathy O'Shea is a 46-year migraineur and 36 year professor of English, who has combined these significant parts of her life into this literary anthology centered around five themes related to migraine. 

She is the winner the Chancellor's Award for Excellence in Teaching and has two beloved golden retrievers who are official therapy dogs at Monroe Community College in Rochester, NY, where she teaches literature, composition, and humanities courses. She is a regular migraine blogger on psychologytoday.com. 

Kathy’s anthology has been selected as a first-place winner in Health for Firebird, "Award Winning Finalist” in the Health: category of the 2021 Best Book Awards sponsored by American Book Fest, and has recently received the Book Excellence Award. 

Kathy has appeared on numerous health-related podcasts to discuss her book and journey with migraine and hopes to use the book to help educate migraine sufferers, their family and friends, medical professionals, and the general public about this debilitating disease. 

You can get her book ' So Much more than a Headache' here:
https://www.kentstateuniversitypress.com/author/kathleen-oshea/

Kathy O' Shea, Professor of English and Patient Advocate

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