PATIENTS' DATA POWERING PROGRESS
PATIENTS' DATA POWERING PROGRESS
Mariah Chrans is the Project Director of Cradle Kansas City initiative. Mariah has worked in public health and maternal child health for 16 years. Mariah received a PhD in Public Health and Community Health in 2021. Her research background is in maternal and infant health, with a focus on the perinatal and intrapartum period.
Mariah joined the Community Health Council of Wyandotte team in September of 2018 with 15 years of maternal and infant health and community health experience. Mariah is adjunct faculty with MCCC teaching Community Health Worker in Workforce Development and is a co-facilitator with MARC and CJCFPD with the Community Paramedic program. Mariah is a cofounder of Uzazi Village and was COO of Uzazi Village from 2012-2018.
Mariah serves on both the KCMO and Wyandotte County Fetal and Infant Mortality Review boards and Community Action Teams, and the Kansas Maternal Mortality Review and Kansas Perinatal Collaborative. Mariah is a member of the APAH Community Health Worker Section Leadership Team, Kansas City Community Health Worker Collaborative, and Kansas Community Health Worker Collaborative. In addition, Mariah is a member of the National Maternal Health PCOR Network (NMHPC), a PCORI Rare Disease Ambassador, and an International Board Certified Lactation Consultant (IBCLC).
Sika Dunyoh is a Director of Patient Advocacy at Travere Therapeutics. In her role, she is responsible for developing and maintaining meaningful relationships with patient advocacy organizations and the communities they serve. Additionally, Sika is leading the development of initiatives to address diversity, equity and inclusion in the rare disease community.
Before joining Travere, Sika was the Director of Education Programs at the National Organization for Rare Disorders, where she developed and managed programs designed to educate patients and caregivers, healthcare professionals and students pursuing careers in healthcare. These programs included NORD’s annual Rare Diseases and Orphan Products Breakthrough Summit.
Prior to NORD, Sika spent almost 15 years developing marketing strategies for scientific societies and developing engaging educational resources for scientific, technical and medical (STM) professionals and researchers.
In 2015, Sika launched Shine Light on Rare Diseases, an awareness initiative she established in memory of her sister, Carolyn, who passed away from complications of relapsing polychondritis, a rare autoimmune disease. The goal of Shine Light on Rare Diseases was to highlight the prevalence of rare diseases and to help people with rare diseases receive faster diagnoses to save and improve the quality of their lives.
As one of the oldest survivors of Spinal Muscular Atrophy, Type II, Stephen Mikita, JD, has dedicated his life and professional career as an attorney championing the lives of individuals with disabilities. Over the last 15 years, his focus has been on improving the quality and efficiency of research through meaningful participant engagement and retention, inclusion of underserved populations, return of results and return of value. Mr. Mikita has participated in the following consortia activities: the Clinical Trials Transformation Initiative; FDA’s Sentinel Initiative; NIH’s All of Us Research Program; Vanderbilt’s Recruitment Innovation Center Community Advisory Board; and NESTcc’s Active Surveillance Methodology Workgroup.
Veronica Moore has over 13 years combined experience in the rare disease arena spanning from patient advocacy, patient engagement, health equity and public health education, patient recruitment and retention. Ms. Moore currently serves as Sr. Patient Advocacy Manager for Horizon Therapeutics. In this role, she is responsible for developing mutually beneficial relationships with patient organizations in the area of Thyroid Eye Disease (TED), a serious, progressive and vision-threatening rare autoimmune disease, in efforts to support the patient journey as it relates to TED. In addition, she is a key contributor to the health equity and inclusion engagement and planning as well at Horizon Therapeutics.
Veronica currently serves on various advisory boards at Duke University and a host of other nonprofit organizations that are focused on diversity, equity, and inclusion (DEI), community engagement among minority communities, and rural settings.
Previously, she served as a Senior Global Patient Advocacy and Insights Lead at IQVIA where she developed patient engagement strategies for a number of global rare disease clinical trials. In that role, Veronica developed and maintained strategic relationships with advocacy organizations in various therapeutics areas globally, developed patient engagement strategies to ensure that patient insights were incorporated into clinical trial design, with special focus on clinical operations and patient recruitment/retention services. Veronica has also served as the national coordinator for the Genetic Disorders of Mucociliary Clearance Consortium (GDMCC), which is an active member of the Rare Disease Clinical Research Network (RDCRN).
Veronica holds a Bachelor of Science from East Carolina University in Public Health Studies and a Master of Arts in Sociology from North Carolina Central University.
For more than 40 years, Nancy has worked with and for the deafblind community. For the majority of those years, she worked at a world-renowned vocational rehabilitation agency, holding a variety of capacities, from teacher to administrator to chief information officer. There, she worked directly with consumers, supervised staff, supported families, conducted research, evaluated data, authored articles, wrote grants, initiated an international network of professionals and consumers, led an agency-wide IT overhaul, and facilitated an organization-wide rebrand, including a newly designed and accessible website.
In 2015, Nancy became the Director of Outreach for the Usher Syndrome Coalition. This position has allowed her to continue to work with the international DeafBlind community, while also sharing her passion and expertise with her local community advocacy boards and committees. Nancy is a skilled communicator in American Sign Language and tactile ASL.
Teneasha Washington is the Founder and CEO of The Washington Group, where she consults and provides expertise in various areas such as grant development, program implementation, diversity, equity, inclusion, rare disease, and many other public health strategic areas of focus. Some of her projects include creating an intervention program manual for Hispanic young women regarding the uptake of better health practices. Also, she attained the first sustainability rating for the City of Birmingham by achieving a three-star status for the Sustainability Tracking Assessment & Rating System (STAR) program. Her current research focuses on serving as the lead of community engagement efforts for the Mindfulness, Exercise, Nutrition, to Optimize Resilience (MENTOR) program. In this role, she develops funding opportunities for local communities and provides training focused on community engagement. She is also a QM-certified professor teaching undergraduate and graduate students in the UAB School of Public Health on social and behavioral sciences, community organizing, intervention development, and research methods. In previous roles, she has served as a facilitator of multiple grants focused on maternal and child health among mothers at the Jefferson County Committee for Economic Development (JCCEO), diabetes and high blood pressure interventions among African Americans, needs assessments related to health, education, safety, and economic security; mixed-methods studies, evaluation of university nursing school programs, and church interventions for connecting communities to health care resources. Washington holds degrees from UAB (BS, Biology; MPH, Public Health; Ph.D., Health Education/Health Promotion, Public Health).
