Ella Balasa is a patient advocate and a person living with cystic fibrosis. Having a biology background, she is an advocate for the development of novel therapies for the treatment of antibiotic-resistant infections. She has spoken publicly about this issue as well as relaying the value of patient voice in research – most recently at the FDA and healthcare conferences. She believes in the importance of engaging patients to be active participants in healthcare by empowering and educating them to collaborate with stakeholders to improve disease outcomes. She has become a professional patient voice in research contributing to clinical trial development, research prioritization, developing patient engagement initiatives. Ella is also involved in the CF community through being a director of the US Adult CF Association and through her passion for writing. She writes about her research and healthcare experiences and introspectively about the hardships yet triumph that comes with living with a chronic illness. She has been published on numerous platforms including MedPage Today, HuffPost, and in Pulmonary Therapy Journal. Through opportunities working with healthcare organizations and sharing her journey through writing, she aims to affect the healthcare landscape to promote self-advocacy to patients and valuable insights to organizations

The room was dark. There were no distinguishable sights or sounds. It felt like the beginning, when the earth was formless, the creation story I’d heard over and over as a child in Sunday school. Somehow I’d fallen into the formless void, the black nothingness. I couldn’t tell you where I was or who was there with me, all I knew was that I was there.

I. Was. There.

The last thing I remember before that moment was waiting to be taken into the OR. I’d already crossed the sterile line, through the double doors into the place where I had to do this alone. There was no one to carry me across the threshold, no one to sit beside me and hold my hand as I crossed over from one life to the next. It was only me, alone. I stared at the ceiling and tried not to cry. I concentrated on the sounds of the nursing shift changeover, with the morning nurses shuffling in with their hands full of coffee and the night nurses with their tired eyes grabbing their bags and heading towards the door. Back out of the land of transition, back into the world of the living. Something about waiting in that OR felt like sacred and holy ground. I kept waiting for someone to walk through the doors that I knew, for someone to come and talk to me to relieve my fears, but every moment I waited pressed into me the fact that I was alone for this part.

From what I know now, I was taken from that waiting room to the operating theatre. I was given a liver transplant, reconstructive surgery, a second liver transplant, all within a 4 day window. The liver ultimately inside my body now didn’t belong to my brother, like we’d all originally planned, but had formerly lived inside the body of a stranger who lived across the country from me. I spent weeks on a ventilator, fighting for my life in the subtlest and most obvious of ways.

And then I remember waking up. For all intents and purposes, I was alone for this part too. I had to carry myself over the threshold. I had to cross over all on my own, from one life to the next. The act of healing is a solitary journey. Doctors and nurses and loved ones cared for me but in the end this work was the kind I needed to do alone. And so I woke up, in this formless nothing, and I don’t remember much except that I felt new life stirring inside me. There’s no good way to describe it except for I felt like I was alive again. Right where my liver rests, I could feel what felt like a glowing, amber light that cradled my body from the inside out.

The 23 years I lived with Glycogen Storage Disease — a rare condition where my liver was missing the enzyme needed to turn glycogen into glucose — everyone always told me it didn’t hurt. My body wasn’t in any physical pain from the missing piece of my liver, that only the effects of this deficiency caused trauma. I believed them, after all they were the professionals and I was only a child. I didn’t know what it felt like to be in a body, didn’t know that this constant level of resonance and vibration wasn’t normal. But when I woke up after that surgery, my body still buzzing from all the pain killers and medications they had given me, I knew right away they had been wrong. There had been pain, I had distinctly felt the lack of that existed inside of me up until this point. And I didn’t feel it anymore. I woke up and without even knowing the outside world existed, I knew I existed. I knew I was alive, and I felt light and nothing hurt anymore.

It was like death, but better. It was rebirth.

When Lucinda became her father’s caregiver at a young age, she struggled with the lack of resources available to her. Taking matters into her own hands, she created I Ally, an app for family caregivers that provides access to mutual aid, mental health services, financial & legal counsel, and peer support. She is a Founding Member of Tech Ladies, owns the social media marketing agency Got It Done Gal, and premiered a short film, Laura Point, at the Cannes Film Festival in 2016. Mrs. Koza is a committed advocate, speaker and thought leader on family caregiving, being a young caregiver, and the role of digital healthcare technology in transforming patient experience.

Chris Molaro, named a top 10 transformational leader of healthcare and a finalist for EY’s ‘Entrepreneur of the Year’ is the CEO and Co-Founder of NeuroFlow and on a mission to bridge the gap between mental and physical health.   After five years of service and a tour of duty, he returned home to witness firsthand the devastating toll of an error-prone and inefficient mental health system in the United States. Afterwards, Chris went on to complete his MBA at The Wharton School at the University of Pennsylvania and launched NeuroFlow after graduating.

Chris is a regular speaker at numerous healthcare events, panels, and summits.  Additionally, Chris has been a featured speaker for the American Psychological Association, Partners Health World Innovation Forum, interviewed on SiriusXM radio, NBC10, and in multiple healthcare and business focused podcasts, guest lectured at Penn’s Engineering school, and provided his expert opinion on CMS policies.

Jay Brown is the Co-Founder and Chief Marketing Officer of Health Behavior Solutions, a digital therapeutics company with health apps currently in clinical testing and development aimed at improving health outcomes for individuals with mental health conditions. Jay is the Program Manager at Texas Health Catalyst, an initiative of the University of Texas at Austin’s Medical School designed to help faculty commercialize their intellectual property and community startups get connected to clinical partners. He previously managed an undergraduate program at UT Austin designed to help STEM students learn about entrepreneurial principles and get experiential learning with science-based market discovery and prototyping.

As an entrepreneur with lived experience with depression, Jay believes that it is important to share his story with others in order to normalize the condition. He volunteers with NAMI Austin to share his personal experience of living with depression with the community, and has led peer support groups for individuals living with depression.

Katherine, the Founder of ForLikeMinds, is an advocate, writer, and entrepreneur dedicated to promoting mental illness recovery and wellness. She is based in New York City. She was first diagnosed with major depressive disorder and then severe bipolar I disorder with psychosis over 15 years ago while in graduate school. She is in recovery. A first-generation high school graduate, Katherine has a BA, JD, and an MBA (Wharton). She is a qualified Barrister & Solicitor, New York Certified Peer Specialist-Provisional, and Certified Psychiatric Rehabilitation Practitioner. She has worked as a lawyer, foreign legal consultant, and entrepreneur in Toronto, São Paulo, and New York City. Katherine also serves on the Board of Directors for the National Alliance on Mental Illness of New York City, the largest affiliate of the leading mental health non-profit organization in the US.

Quayce Thomas is the Founder of Timsle, a social accountability network he built after being diagnosed with bipolar disorder and psychosis while studying architecture. Through Timsle, Quayce explores how data and technology, combined with the support of friends and family can help others with mental health disorders functionally overcome their illness as well. Quayce graduated from Carleton University’s Born Social Fellowship, University of Ottawa’s Patient Safety & Quality Improvement Leadership program, and interned at IBM Center for Advanced Studies. Although he is usually coding, he maintains his health through running and biking (even in Ottawa winters!).

Lisa Smith is an IACPRC Certified Recovery Coach, SHE RECOVERS® Coach, speaker, consultant, and former practicing lawyer and law firm executive. She is the author of the acclaimed memoir, Girl Walks Out of a Bar. The book recounts her descent into and recovery from “high-functioning” alcohol and cocaine addiction in big New York City law firms. Lisa’s story launched her to the forefront of the movement to advance wellbeing in the legal profession. She is passionate about smashing the stigma around mental health and substance abuse disorders so that more people are comfortable asking for the help they need. Lisa speaks frequently at law firms and other organizations on these issues. She consults with firms to structure and implement wellbeing initiatives that are both meaningful and practical. As a recovery coach, Lisa helps clients define and work toward achieving goals to support recovery and improve their personal and professional lives. She also co-hosts the podcast, Recovery Rocks, an inclusive discussion of issues affecting people in all kinds of recovery.

Olivia Pennelle is a writer, journalist, and recovery activist. Her work has appeared in STAT News, Insider, Filter Magazine, Ravishly, The Temper, and Shondaland. She is the founder of popular site Liv’s Recovery Kitchen. She lives near Portland, Oregon.

Jesse is both a non-drinker and founder of The Mocktail Project, a mission based project helping to create a safer, more inclusive, stigma-free drinking culture. Jesse began his career in business consulting, helping streamline small business needs. In 2017, on his sobriety date, Jesse walked away from the comforts of his corporate life to start his newest journey in his professional career, The Mocktail Project.

In 2017, in conjunction with the start of his newly formed mission, Jesse traveled cross-country for more than two years. He achieved his goal of visiting all 48 lower states in early 2019. His personal goal during this time was to try new activities he once thought were impossible to do while sober. Professionally, he wanted to embrace new ideas and spark new conversations around sobriety and the alcohol-free community. Today, Jesse leads national campaigns in the alcohol-free community partnering with big spirit brands. This fall, The Mocktail Project will be introducing the first mobile mocktail bar in Bourbon Country. On 4.16.2020 Jesse celebrated six years of active recovery & three years since forming The Mocktail Project. In that time, The Mocktail Project has crafted and served more than 35,000 alcohol-free cocktails for those choosing not to imbibe.