PATIENTS' DATA POWERING PROGRESS

DEI Advisory Council

Mariah Chrans

Broderick Crawford

Eve Dryer

J. Stephen Mikita

Veronica Moore

Nancy O'Donnell

Adrian Palua-Tejeda

Teneasha Washington

Teneasha Washington

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Mariah Chrans

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).

Broderick Crawford

Broderick Crawford has been a lifelong advocate for social and health equity for minority communities. Born and raised in Wyandotte County, he witnessed the significant impact of poverty, food insecurity, job insecurity, and limited resources has had on communities. After working for almost thirty years in clinical research and healthcare systems, Brodrick transitioned to a community-based setting to promote health outcomes through community engaged programs. He now serves as President of the NBC Community Development Corporation. Brodrick is also a patient advocate, serving on the national Trial Innovation Network Recruitment Innovation Center (Improving Clinical Trial Education, Recruitment and Enrollment at CTSA Hubs (I-CERCH)) with Drs. Consuelo Wilkins and Paul A. Harris. At the local level, he serves as a patient and community leader for the KU Cancer Center and co-leads the Patient and Community Partner Group for Frontiers: University of Kansas Clinical and Translational Science Institute.

Eve Dryer

Patient Advocacy

Eve has played many roles during nearly 25 years of work in healthcare communications:  a patient advocacy leader, a champion for underserved populations, an innovator in patient communications, and much more. Throughout this time, her unwavering passion and dedication to advancing healthcare literacy and multicultural outreach, and improving health outcomes in underserved communities have earned her the respect and admiration of her peers.

Eve is the Vice President of Patient Advocacy at Travere Therapeutics, working closely with numerous rare disease and diversity health organizations.  In 2020, Eve spearheaded Travere’s efforts as a founding leader in launching the Rare Disease Diversity Coalition (RDDC), which is led by the Black Women’s Health Imperative, with the goal of addressing the extraordinary health care challenges faced by rare disease patients of color.

It has brought together diversity healthcare leaders from medical organizations, patient advocacy organizations, industry, and government who are committed to elevating rare disease awareness, increasing access to and quality of research and development, and improving patient diagnosis and treatment for rare disease.

Previously, Eve led Patient Advocacy at Lexicon Pharmaceuticals for nearly four years, serving patients in the rare neuroendocrine cancer community. Prior to joining Lexicon, Eve served as a strategic consultant in stakeholder, policy and patient engagement initiatives with a number of leading healthcare companies, including GlaxoSmithKline, Allergan and Eisai.

During 1998 to 2012, Eve founded and led Vox Medica’s public relations and patient advocacy practices, as one of the agency’s four partners. Her communications work there spanned numerous therapeutic categories, including oncology, Alzheimer’s, and mental health.  Under Eve’s direction, the agency was awarded eight Silver Anvil Awards from the Public Relations Society of America (PRSA), including one in the multicultural youth category, Teens 4 Pink

Prior to Vox Medica, Eve served on the senior management team of top-ranked global Healthcare PR agency, Manning, Selvage & Lee (now Publicis). Eve joined MS&L from Aetna, where she had been VP for communications.

She plays an active role as a Board Member for Sisters Network Inc., the national African American breast cancer organization, serving as a strategic advisor on stakeholder engagement in breast cancer disparities.

Eve served three terms on the Global Board of Directors of the Healthcare Businesswomen’s Association (HBA), and in May 2013, was honored as their STAR awardee.  She was recognized as a 2008 Mover and Shaker in the annual

PharmaVOICE 100, repeating that achievement in 2016, and now again in 2021 for her work in diversity engagement in Rare Disease.

 

J. Stephen Mikita

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

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.

Nancy O’Donnell

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.

Adrian Palau-Tejeda

Adrian Palau-Tejeda is the Diversity and Inclusion Fellow for the EveryLife Foundation for Rare Diseases. A Midwesterner in all that he does, Adrian began his outreach work walking the streets of Milwaukee, field organizing in under-served communities. In his role at EveryLife, Adrian strives to develop diverse relationships and resources to establish meaningful connections with diverse rare disease communities.

Teneasha Washington

Diversity, Equity, & Inclusion Lead

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).