Navigating Clinical Trials from the Patient and Caregiver Perspectives, from the Patients as Partners Conference

Mackenzie Abramson, MPH, CPH, CHES, is a rare and chronic disease patient dedicated to advocacy for herself and all patients alike. Diagnosed in her mid 20s, she dove headfirst into higher education so that she could bridge the gap between public health and rare disease. Ms Abramson spent hours learning the art of self-advocacy in environments where it seemed like her diagnosis odyssey would never end. Ms Abramson’s journey led her to spend years advocating for herself and others on an International Scale. She found her community through participating in and speaking publicly about her journey at events with patient advocacy organizations such as Global Genes, NORD, EDS Society, NIH Rare Disease Day and more. Ms Abramson shares her story, offering insights into how she learned to navigate the challenges that came along with a rare diagnosis, hoping it will empower others facing similar situations. Fueling her passion, Ms Abramson pursued and completed a Masters in Public Health, driven by the desire to convert her personal experience and dedication to rare disease research and advocacy into a career. Today, she is deeply entrenched in the rare disease research space, dedicating my time to supporting patients, caregivers, families, and friends impacted by rare and chronic diseases.

Patrick Gee, Sr, PhD, JLC, is Founder & Chief Executive Hope Dealer, iAdvocate, Inc. Dr Gee graduated from the American University School of Public Affairs in 2012 with a Doctor of Philosophy in Justice, Law & Criminology. Dr Gee is a former Peritoneal/Hemodialysis patient due to suffering from Diabetic Kidney Disease. He has been a Post-Kidney Transplant Recipient since April 2017. Dr Gee is also a retired Major/Chief of Security from the Virginia Department of Corrections; and currently serves as the Founder & CEHD of iAdvocate, Inc., a non-profit Faith-based Health & Wellness organization. He is also an Ordained Minister at Mountain Movers Ministry in Richmond, VA. As a Patient Representative for the Diabetes Kidney Disease-Collaborative Task Force and an advocate for those living with chronic kidney disease and the morbid conditions that contribute to this disease, such as diabetes, cardiovascular disease, hypertension and obesity, Dr Gee uses his personal experiences to teach, coach, mentor and educate others on how best to manage their outcomes. He also ensures that underserved, undervalued and disenfranchised communities of color have a voice in their quality of life and equitable healthcare access. He also serves as Chair of the Kidney Health Initiative's Patient Family Partnership Council and is on ASN's APOL-1 Kidney Disease Steering Committee.

Yvonne McLean Florence, MDiv, is a wife, mother and G-mom who was diagnosed with early stage breast cancer and now living with no evidence of disease. She is a breast cancer survivor, the former President/Founder of Sisters R Us Circle of Survivors and an independent patient advocate. She received a Masters of Divinity from Palmer Theological Seminary formerly Eastern Baptist Seminary in 2010, completed the AACR Scientist and Survivors Program, National Breast Cancer Coalition Project LEAD Program in 2018, the University of Pennsylvania Community Research Scholar Program in 2019; and, in 2023 the MBCRC Advocate Researcher Program and the Alamo Advocate Scholar Program during the San Antonio Breast Cancer Symposium. Ms McLean Florence has been involved in patient, research and public policy advocacy with an emphasis on clinical trials, community participatory research, diversity, equity and inclusion, quality of care/life for patients and survivorship. As a way to keep the voice of the patient elevated in cancer research, she continues to serve on numerous peer review panels for local and national organizations as a patient advocate, a patient stakeholder, a consumer reviewer and advocate mentor. She is one ten ambassadors for the National Coalition for Cancer Survivorship (NCCS) 2023-24 Elevate Ambassador Program and a member of their Cancer Policy Advocate Team (CPAT). She is also blessed to represent Delaware County in the Pennsylvania Breast Cancer Coalition’s Traveling Exhibit 67 Counties, 67 Women Affected by Breast Cancer and serve as a County Block Captain for their Driving Out Breast Cancer Campaign.

Emily Parks is a chronically ill young professional based out of the Washington DC area 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.Despite these challenges, Ms Parks has both traveled and lived internationally, is a graduate of Boston University and currently works outside of Washington DC as a Supervising Vocational Specialist. In this role, she coordinated a team that aids individuals with mental illness in obtaining and maintaining employment. 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 their treatment outcomes as well as the power of conscious communication throughout the US healthcare system.Ms Parks serves as the Massachusetts Pilot Director for Health Advocacy Summit, a member of Young Adult Representatives of RDLA through the EveryLife Foundation for Rare Diseases, the secretary of MedStar Georgetown Hospital’s Patient & Family Advisory Council for Quality and Safety and has been an invited speaker at multiple national forums.

Jaye Bea joined Immunovant, Inc., a clinical stage biotech company, as Head of Patient Advocacy in June 2020. Her twenty-five-year career in health care includes extensive experience in the public and private sector focused on advancing the needs and interests of patients and caregivers. Prior to joining Immunovant, Jaye Bea was Celgene’s Global Director of Patient Advocacy and Life Cycle Management, Inflammation & Immunology. Prior to Celgene, Jaye Bea worked at Boehringer Ingelheim where she helped establish and implement a patient engagement strategy. Prior to Boehringer Ingelheim, she was an Engagement Officer at the Patient-Centered Outcomes Research Institute where she helped establish programs and processes to bolster patient and stakeholder engagement in research and monitor PCORI’s funded portfolio for innovative patient engagement methods and practices.