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 chance

to live out my potential. I had years of physical therapy and terrific

doctors, who helped set the groundwork that I could build on.

My parents fought to get me into regular schools, where I learned

how to adapt to the world around me, make friends, and start fostering

my resilience.

I have two degrees from the University of Chicago and a law degree

from George Washington. My academic life taught me critical thinking and the power of ideas to change ourselves and the world around us.

As I grew older, the entrepreneurial world called to me. It was a place

where I could build something bigger than myself and test my resilience,

problem solving, and adaptation skills while also creating a company

I would be happy to work for. 15 years later, my company is thriving and

growing.

More recently, I started a podcast called Enabled Disabled in order to

empower people with a disability to share their stories and their

adaptations. The purpose is twofold: we want to change the hearts

and minds of the non-disabled and shine a light on our potential, and

just as importantly, we want to dive into our vulnerabilities as people,

with the hope that we find more strength in ourselves and each other.

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 faulty so there is nothing any doctor can do to help. I am stuck like this permanently and just have to deal with it.

https://www.instagram.com/joeysooch/

https://www.youtube.com/watch?v=_5P2U05uTfY&t=524s

Wedding vlog

https://www.youtube.com/watch?v=L-JLGt1R_RA&t=496s

Follow me on instagram!

https://www.instagram.com/joeysooch/

Proof https://www.instagram.com/p/CSzILlaLhor/?utm_source=ig_web_copy_link

More proof https://imgur.com/a/8fTzUcZ

https://www.dailymail.co.uk/video/health/video-1165043/The-boy-turning-stone-The-story-Joey-Sooch.html

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 supporting healthcare leaders as they strive to create healthy, healing work cultures. They frequently speak at national and international leadership conferences on the topics of managing healthcare polarities, achieving work life balance and living a resilient life.

MissingLogic was recently featured on CNBC for their work with healthcare organizations and their Healthy Healing Organization (H2O) Framework™. Michelle and Tracy have also developed the Dynamic Balance Effect™ (DBE) Framework to help healthcare leaders experience joy, live with intention and be their best self at work and at home. The DBE Framework provides the foundation for their numerous healthcare leader group-coaching programs.

WEBSITE LINK:

https://www.missinglogic.com/

SOCIAL MEDIA LINKS:

https://www.linkedin.com/company/missinglogic-llc

https://www.facebook.com/missinglogicLLC

https://twitter.com/MissingLogicLLC

https://www.instagram.com/missinglogic_llc/

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 opportunities through SP education and simulation. These methodologies use professionally trained actors, retired teachers and others to portray specific patients and families in a broad spectrum of healthcare experiences for learners – a safe space to develop clinical and communication skills and receive feedback from the patient perspective.

Prior to Georgetown, she held a faculty position as senior SP trainer at Uniformed Services University of the Health Sciences, and as academic-affairs staff at Johns Hopkins Medical School. Prior to her work in med-ed experiential learning, she managed a forum of women in international trade and diplomacy, taught as adjunct faculty on Georgetown’s main campus in the mid-90s, served as marketing manager for a B2B organization, and as chapter liaison for a national trade association. In the early days of online journal search-and-retrieval and library automation, she worked as a researcher at the National Library of Medicine, Library of Congress and other libraries. While in college and beyond, she worked for the UVa Hospital Education system, teaching children with disabilities from birth to age 21.

Mary presented (virtually) at the Ottawa Conference in Kuala Lumpur, Malaysia, as a finalist for the IMU-RHIME Award for Innovation in March of 2020, and won an innovation award for her presentation at the international Association for Standardized Patient Educators in 2011. From 2016-18 she served as Chair for the Mid-Atlantic Consortium of med-school clinical-skills programs. In 2016, GUMC honored her as a “bridge-builder” in the Ongoing Engagement and Consultation initiative. She recently joined the editorial board for the Journal of Health Design, published in Melbourne, Australia.

She joined the Screen Actors Guild in 1999; speaking roles to-date have landed on the cutting-room floor, but she (or her old Honda Civic) can be seen as background in various TV and film productions. Mary’s artwork has sold in art fairs and hospital exhibitions, and through personal commissions. Her days as a publically performing singer and guitarist are largely in the past, but she dreams of resurrecting half-written original songs someday. Other work that will never retire – writing short stories, children’s books, a memoir, a novel and personal essays. Meanwhile, she launched a blog/website in early 2021: marymuffindonovan.com

She received her BA in English from the University of Virginia, MA in Liberal Studies from Georgetown University and MFA in Writing from Vermont College of Fine Arts.

Twitter: @marydonobird

Instagram: @maryfdonz

Facebook: /mary.donovan.75457

Website: marymuffindonovan.com

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 conference on personalized medicine at Harvard Medical School, he spoke up to provide his experience as a patient, and was told in the breaks afterward by many attendees that he had a voice. He felt this must be his calling, and he decided to focus his skills and experience on accelerating innovation in cancer treatment. Because of his experience in working with large, successful companies, he was skeptical that incumbents would drive the big, disruptive process changes as fast as patients need. He decided to do what he could to help (1) patients that actively engage in solving their problems and make them available to others, and (2) startups that are disrupting the health system to help patients get educated, navigate, and form community.

In late 2020 Brad was talking to his friend Bryce Olson, who said he had hit a wall in keeping his metastatic prostate cancer at bay. Brad suggested to Bryce that they could run a hackathon (a collaborative effort of a diverse crowd of experts) for him to find his best next treatment option, which they did from December 2020 to March 2021. Brad is currently hosting two hackathons: one for Linnea Olson, a lung cancer patient, and another for Kasey Altman, a young woman with a rare cancer. Brad hopes to make hackathons available to many more patients who are facing complex treatment decisions.

Brad is a founding member of Ennov1; an advisor to Alva10, Blue Note Therapeutics, Cancer101.org, and Rabble Health; and is an active contributor to the Personalized Medicine Coalition.

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 Hospital in Cleveland, Ohio. She is also the project coordinator for The Beryl Institute’s Patient Experience Policy Forum (PXPF) and serves on the Global Patient and Family Advisory Board. As the parent of a child with complex medical needs, and a person with chronic health issues of her own, Nikki has spent lots of time in healthcare settings and is interested in improving equity, engagement and communication with patients.

Her paper in the Journal of Health Design is here: https://www.journalofhealthdesign.com/JHD/article/view/136

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 from Boston College.

Gunnar worked on an enteral feeding product at a medical nutrition company, was appointed to the board of directors at the Boomer Esiason Foundation, and was the head coach of his high school alma mater’s varsity hockey team. Gunnar maintains the Chief Strategy Officer & Director of Advocacy at the Boomer Esiason Foundation where he manages the organization’s strategic philanthropy fund. He also serves on the board of No Patient Left Behind, a non-profit organization whose goal is to lower out of pocket costs for patients.

He has consulted on clinical trial development, population health studies, and a cystic fibrosis-specific mental health and wellness screening tool. In 2019, Gunnar delivered the pre-commencement address at the St. Louis University School of Medicine commencement exercises. He has also been featured as a keynote speaker at more than two-dozen top medical centers, biotech conferences, and health industry events across the United States. His health policy opinions have been featured in USA Today, The Wall Street Journal, STAT News, Newsweek, The Hill, RealClear Politics and Morning Consult. Gunnar also recently published a white paper documenting the antibiotic market dysfunction as a barrier to future drug development with the Pioneer Institute in Boston, MA. Gunnar lives in Hanover, NH. Follow him on Twitter @G17Esiason or check out his blog at www.GunnarEsiason.com

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, she is an innovator with a keen desire to design a truly family –centered model of well-being that includes a level playing field. Jamia has shared that it’s her personal mission to empower families in Virginia to become stakeholders in their own success. By providing prevention, education, resources, tools and access to wrap-around services, it’s her hope that together we can develop sustainable, healthy families two generations at a time.

Jamia has shared that she believes a good laugh, a listening ear and an open heart cure everything. She also believes that hard work and sacrifice are always rewarded, that a leader can do nothing without a team, and that when your passions align with your life purpose, great achievements can be made.

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 young adults with chronic medical disabilities across the U.S. and internationally. She is proud to work with a team composed entirely of young adults with chronic medical disabilities and also to keep the HAS and CCYAN and independent from the pharmaceutical and insurance industries.

Sneha has completed an undergraduate research fellowship in health policy at Harvard T.H. Chan School of Public Health. She has also interned at numerous places such as Pfizer Global Headquarters in health economics and outcomes research for Inflammation and Immunology. Sneha has spoken on Capitol Hill, featured nationally on C-SPAN, and is a past contributor for U.S. News and World Report. She has served on the Democratic National Committee Disability Policy Subcommittee and recently joined the Midwest Comparative Effectiveness Public Advisory Council, an independent appraisal committee of the Institute for Clinical and Economic Review. Sneha was awarded two academic fellowships with the Association of Health Care Journalists. She was previously a national policy fellow at RespectAbility and now serves as the youngest director on the board for the national nonprofit. Sneha has spoken at the Democratic National Convention, Stanford Medicine X, the National Academies of Medicine, and other major avenues. For her work, Sneha was selected as one of the most influential teenagers in 2018 by the We Are Family Foundation and was recognized as an American Association of People with Disabilities Emerging Leader in 2020.

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 experience is implemented in every program she develops.

Shazia has also served as a study coordinator at the National Institutes of Health (NIH). While at the NIH, Shazia coordinated intramural clinical trials across the various institutes, including the National Institute of Allergy and Infectious Diseases (NIAID), National Institute of Neurological Disorders and Stroke (NINDS) and the National Cancer Institute (NCI).

Shazia is a thought-leader in patient advocacy, with a desire to improve healthcare and integrate successful solutions that bring optimal access and diversity to clinical trials. Shazia serves as a Board Advisor on the HPV Alliance, a non-profit organization that helps to advance the prevention of HPV-related cancers through education, advocacy and research.

Her passion for the diverse people of the rare disease community continues to drive her work though the implementation of patient advocacy initiatives.

Connect with her on LinkedIn: https://www.linkedin.com/in/shaziakahmad/

Follow her on Twitter at: @ShaziaKAhmad