Optimizing Clinical Trials with Patients and Caregivers

Catherine Ames, B.A., is a professional patient advocate, published author, and keynote speaker who weaves narrative expertise into health research and communications. Author of the popular column Chronically Catherine, she writes candidly about the complex experience of being a young disabled woman, exploring tough and taboo topics with humor and fabulosity. Her business, Fierce Hope Patient Advocacy & Consulting, provides executive strategic guidance to pharmaceutical companies, non-profits, researchers, health news outlets, and more. @itschronicallycatherine

O’Ronica Fields is a dedicated former educator who devoted over 2 decades to serving the Philadelphia School District as a Teaching Assistant as well as a Home and School Committee President/ Treasure, influencing the lives of students ranging from kindergarten to fifth grade. Passionate about community and education, she extended her commitment beyond the classroom by volunteering with Philadelphia’s Fight Program, which provides essential services to individuals affected by AIDS and HIV. Additionally, O’Ronica served for 10 years as an acting Committee Person educating people in the Northwest community about issues affecting local government. In 2020, Ms Fields faced a personal challenge with the diagnosis of breast cancer. Undeterred by her circumstance, she embarked on a courageous journey of treatment and participated in clinical trials. O’Ronica is approaching two years post treatment and she has gained a new level of strength emotionally and spiritually. Her resilience and determination have not only led to personal triumph, but also positioned her as a beacon of inspiration for others. Today, O’Ronica leverages her experience as a Cancer Thriver by actively participating as a Person-to-Person Cancer Mentor offering support in guidance to individuals navigating the complexities of their own cancer journeys. She is a Fox Chase Clinical Trials Ambassador that strives to edify the Black and Brown communities about the importance of participating in clinical trials. In addition, O’Ronica is an International and Domestic Missionary, going into various communities to teach about Jesus Christ and the Christian faith.

Jon Nelson is a lived-experience expert in mental health. A healthcare communications executive in the biopharmaceutical space for 20+ years, Jon is a tireless advocate and voice for those who, like him, suffer from mental illness. Jon’s mission is to pulverize the stigma associated with mental illness to help the millions who needlessly suffer in silence. Jon was first diagnosed with mental illness in 2010 and has participated in numerous treatments since then intended to mitigate against its harmful effects. Having not shown improvement after exhausting all treatment options, in 2022 Jon became one of only a small handful of people in the US to participate in clinical trials aimed at healing mental disorders and related depression. Known as deep brain stimulation, the procedure was built on the scientific premise that electrical stimulation could reset brains that are in the grip of powerful and devastating psychiatric disorders such as depression, obsessive-compulsive disorder and post-traumatic stress disorder. The procedure was a resounding success. He has been in remission from depression since the day the device was turned on in August 2022. Of the many physiological and psychological challenges that Jon has endured over the years, perhaps the biggest one he’s yet to overcome is the stigma that’s often associated with mental illness. In today’s world, the resilience of those who have diseases like cancer is often celebrated while those grappling with mental illness are heavily stigmatized. Rather than succumbing to the challenges of suffering with mental illness and its stigma, Jon instead chose to channel his experiences into a lifelong mission of advocacy and support. Jon currently serves as a strategic advisor for several not for profits including One Mind and Mental Health Collaborative and as an advisor to Motif Neurotech, which develops minimally invasive bioelectronics to treat and monitor severe mental illness. Most recently, Jon was invited by the NIH to speak at a congressional briefing to discuss progress from the BRAIN Initiative, which fosters better understanding of the human brain and its potential for revolutionizing treatments for neurological and neuropsychiatric disorders. Jon previously held executive leadership roles across several companies including Omnicom and Syneos Health. Jon resides in Newtown, PA along with his wife Barbara and their three children, and when he’s not tirelessly serving as a lived-experience mental illness expert, he can be found on the ice coaching youth hockey.

Sharon Rivera-Sanchez is the Founder and Chief Executive Director of Trials of Color & Saving Pennies 4 A Cure, both are non-profits 501-C3 organizations founded in 2018, and Trials of Color in 2022. The mission is to educate, advocate, and empower cancer patients with a primary focus on Diversity in Clinical trials, awareness, and prevention. Born and raised in Augusta, Georgia, in 2015, Rivera-Sanchez was diagnosed with Triple Negative Breast Cancer. She has participated in five medical clinical trials. She successfully completed two, withdrew from two, and she is currently involved in one. Unfortunately, in 2021 Sharon became a caregiver for her brother who passed away from colon cancer. She is currently a voice for the voiceless, she speaks about colon cancer awareness and screening in the black community. She is also a 2022 Project Lead graduate. Rivera-Sanchez has lobbied US Congressmen and collaborated with local advocates in order to achieve health equity for the African American community. She also serves on many Boards, just to name a few: National Cancer Institute (NCI) Massey Cancer Center (NCORP) Massey Cancer Center -DEI Advisory Committee University of Pennsylvania- The Radcomp Study University of Pennsylvania -Clinical trial Ambassador) GRASP- Member American Association for Cancer Research (AACR) -Member CPAT - Member

Christine McLennan joined BioNTech during the global pandemic, as she was impressed with BioNTech’s passion and commitment to improving the health of people worldwide with innovative immunotherapies. In her current role, she partners with patient advocacy groups to create awareness of clinical trials designed for patient populations with unmet medical needs. Ms McLennan began her career as a clinical nutritionist at McMaster University in Ontario, Canada, where compassionate, patient-centered care and evidenced-based medicine were fundamental to clinical practice. She has been involved with patient support groups for over 30 years. Early on in her career, Ms McLennan helped to establish a local chapter of the Canadian Diabetes Association and also served as the nutrition advisor for local support groups for people with Inflammatory Bowel Disease and Celiac Disease. She then moved to the Department of Preventive Medicine and Epidemiology at Boston University, where she managed NIH-funded research studies in heart disease, arthritis and osteoporosis. Since 2008, she has directed clinical trials for a wide range of therapeutic indications for various CROs and small biotechs in the Boston area. She has great passion for preventive medicine and endorses advocacy work that promotes surveillance and early intervention among high-risk populations. Her goal as a healthcare professional is to engage in efforts that create access to effective and affordable health care for people across the globe.