Family Voices
Leadership Conference

Allysa Ware, PhD, MSW, is the Executive Director of Family Voices. She is a family leader and researcher with extensive experience in strategic planning, family engagement, grant writing, human relations, and systems change, and she believes strongly in family and community leadership in developing solutions and improving systems. Dr. Ware’s research is focused on the lived experience of individuals and families with an autism diagnosis. Her commitment to advocacy for individuals on the autism spectrum began with her personal experience as a parent and expanded through her practice as a social worker. She became increasingly frustrated with pushing families toward ineffective and inaccessible systems and made it her mission to help improve these systems with a goal of improving the overall functioning of children and youth with special health care needs and their families. In addition to contributing to numerous academic journals, including Pediatrics, Children and Youth Services Review, Advances in Social Work, Health Policy, and Academic Pediatrics, Dr. Ware was recognized in 2022 with the Researcher Award for Milestones Autism Resources, a nonprofit organization that provides lifelong strategies and support for individuals on the autism spectrum. She has collaborated with notable researchers to conduct in-depth research on kinship care, transition to adult care, and early childhood systems. Dr. Ware is the principal investigator on several initiatives at Family Voices, including a PCORI Eugene Washington Engagement Award for building capacity for autism research in the African American community; the ACL-funded Center for Transition to Adult Health Care for Youth with Disabilities; and Pediatrics Supporting Parents, an early childhood social-emotional development initiative. Dr. Ware holds a BA in Psychology from University of Maryland Global Campus and a master’s and PhD in social work from The Catholic University of America. She is based in Cleveland, Ohio and enjoys board games, shopping, and reading. She’s an immensely proud mother of an autistic young adult daughter who is pursuing a master’s in social work. Above all, she wants to ensure that the well-being of children and families are at the heart of all she does.

>Nakela L. Cook, M.D., MPH, is the executive director at the Patient-Centered Outcomes Research Institute (PCORI). She is a cardiologist and health services researcher with a distinguished career leading key scientific initiatives engaging patients, clinicians and other health care stakeholders at some of the nation’s largest health research funders.

Cook leads PCORI’s research, engagement, dissemination and implementation, and research infrastructure development work. She also provides oversight to a growing number of programs and initiatives designed to create a more efficient, effective, and patient-centered system of health. Under her leadership, and with extensive engagement of stakeholders, PCORI established a bold strategic vision to address the challenges, including social determinants of health, facing patients and communities in our nation’s complex, fast-changing health system.

Prior to her current role, Cook served as senior scientific officer and chief of staff at the National Heart, Lung, and Blood Institute (NHLBI), the third largest institute of the National Institutes of Health. At NHLBI, she spearheaded the development and implementation of its strategic plan as well as initiatives in cardiovascular outcomes, precision medicine, data science, sickle cell disease and women’s health.

Throughout her career, Cook has been a leader in efforts to reduce disparities in health access and outcomes. She has received numerous awards for her excellence in clinical teaching and mentorship as well as her leadership of complex scientific initiatives and programs.

Cook earned her medical degree from Harvard Medical School and a Master of Public Health in health care policy and management from Harvard School of Public Health. She completed her clinical training at Massachusetts General Hospital in Boston.

>Dr. Salley is a pediatric psychologist with expertise in delivering support and intervention to parents and caregivers of children with complex medical needs. At Courageous Parents Network she serves as Director of Clinician Engagement, delivering provider education and outreach. She is actively involved in the Society of Pediatric Psychology, Division 54 of the American Psychological Association. In addition to co-authoring the Standards of Psychosocial Care for Parents of Children with Cancer, she has founded a professional group of pediatric psychologists who are committed to supporting parent caregivers through clinical intervention, research, education and outreach. Chrissy also collaborates with colleagues nationally and internationally on efforts to improve the illness experience for children and their families and publishes on these topics.

>Kelsey Stanczyk is a nurse and bereaved mother. She lovingly cared for her daughter with medical complexity. As Parent Champion at Courageous Parents Network, Kelsey shares her familly's story to improve the pediatric healthcare experience for families and providers. Kelsey is an advocate for pediatric palliative care and speaks about the impact palliative care can have for families.

>Everett Deibler is a Faculty Specialist and Technical Assistance Provider with the University of Maryland’s National Technical Assistance Center on Transition: The Collaborative (NTACT:C) and serves as Youth Engagement Project Coordinator for the RAISE Center at SPAN in New Jersey. He holds a Bachelor of Arts in Psychology from Millersville University and a Master’s degree in Special Education and Human Development from The George Washington University. His work focuses on youth leadership development, disability advocacy, inclusive higher education, and strengthening authentic youth voice in transition and workforce systems. As a person with Cerebral Palsy, Everett brings lived experience that informs his commitment to accessibility, equity, and meaningful engagement.

He has contributed to national and multi-state initiatives including YETI, the Youth Engagement Now website, Pennsylvania’s SAIL program, and transition programming at LVCIL and Lehigh Carbon Community College. He designs technical assistance, develops youth-led models, and builds partnerships that advance responsive systems.

With a background in Psychology and Sociology, Rachel Shandler uses her unique skillset to fuel her passion for supporting others. Before obtaining her current role, she was an information and Referralist, Person Centered Counselor, and Peer Support Group Facilitator for The Bucks County Center for Independent Living, which is where she gained valuable experience assisting those with varying disabilities. As someone who has Cerebral Palsy and navigates the world using a motorized wheelchair, Rachel understands first-hand the power of advocacy and the importance of empowerment.

>Tara Szymanek is the Regional Family Engagement Specialist for the Southern Region of the NJ Family Engagement Hub, supporting infrastructure, coordination, and cross-system collaboration. She previously served at SPAN as a PTI trainer, SEVA advocate, and Family Resource Specialist for the Family WRAP project, helping families build skills in communication, advocacy, and understanding their rights in special education. Tara is a military parent stationed at Joint Base McGuire-Dix-Lakehurst and has supported families and professionals in special education since 2016. Her experience includes work as a registered behavior technician, Family Support Partner within CSOC, and parent leader supporting military families through EFMP. She is a 2021 Partners in Policymaking graduate and advocates at state and federal levels on issues related to rare disease, disability, and genetics. Tara is a passionate, creative advocate dedicated to inclusive practices, family engagement, youth empowerment, language access, and strengthening school–family collaboration.

>Cindy is a dedicated advocate for the health and wellbeing of children and families across New Jersey. She actively serves on several boards and committees that strengthen community support systems and systems of care. As the current Board President of the Family Support Organization of Cumberland, Gloucester, and Salem Counties, she provides leadership and guidance to initiatives that empower families. Cindy also chairs the Youth and Family Engagement Committee of the Cumberland County Children’s Interagency Coordinating Council, where she promotes collaboration among service providers and families. In addition, she contributes her expertise at SPAN, helping families navigate early childhood programs and resources. Balancing her professional commitments with her role as a devoted mother, Cindy continues to build partnerships that ensure all children and families have the opportunity to thrive.

>Dr. Kathleen Van Antwerp (“Dr. K”) is the Executive Director of the Partnership for Safe Families & Communities of Ventura County, a 503(c)(3) nonprofit focused on preventing child abuse and family violence. With more than 30 years of experience, she has shaped youth outreach and educational programs in schools, shelters, foster care systems, and juvenile halls. Dr. Van Antwerp pioneered incorporating the science of child and adolescent development into juvenile crime-prevention efforts—training law enforcement, probation officers, and judges across the United States—and transforming youth outreach centers through this evidence-based approach. She specializes in behavioral and organizational development, creating intervention plans for children and families in crisis. A prolific scholar and advocate, she has authored over 20 national and international publications on children, youth, and families.

>Jackie has been a Parent Leader in Ventura County for more than 17 years. During those 17 years, she has been instrumental in the development of The Parents Voices program. In creating The Parents Voices quilt, Jackie brought to life the vision of parents with cross-sector lived experience using their voices to make change, helping to bring Ventura County to the forefront of parent leadership development. 

Jackie started with The Partnership for Safe Families and Communities as an intern in 2008; more than 17 years ago. As the Community Outreach Specialist, Jackie is a part of the Coastal Tri Counties Child Abuse Prevention Council Parent Leadership, a Co-Chair in the Ventura County Wellness System Collaborative, a Parent Navigator for The Partnership Network of Care, and technical advisor. 

Jackie is a mother of 4 children, 21, 14, 8 and 6.

Janel Anessa Aguayo serves as a Youth Voice Co-Leader in the Youth Voices program under the Partnership for Safe Families and Communities, where she works to elevate and amplify the voices of youth in Ventura county, ensuring their experiences and ideas help shape local initiatives. She also works as a Program Manager for the People with Lived Experience program, helping to center community voices in systems change. Her leadership have led her to present at a state-level conference with other youth leaders and speak directly with California legislators about the importance of uplifting youth voices in policy and decision-making.

>Kylee is certified mindfulness yoga instructor and a Youth Voice Co-Leader for the Partnership for Safe Families & Communities.

Being a youth leader means creating space where young people can be honest, where our struggles are taken seriously, and where our ideas can turn into action. I’m still growing. I’m still learning. But I’m committed to using my voice and helping others use theirs because I’ve seen how powerful we are when we lead together. I learned that leadership is really about listening to my peers, listening to what my community needs, and listening to the part of myself that wants to make things better.

>Susan Agrawal, PhD, is a parent, advocate, and writer who began serving as the Director of the Family-to-Family Health (F2F) Information Center in 2024, assisting families of children and young adults with disabilities and special healthcare needs to navigate the health care and disability systems in Illinois. She has lived experience through her daughter Karuna, who had multiple disabilities and complex health issues throughout her eleven years of life. Susan is the founder of MFTD Waiver Families and spent more than a decade advocating for children in the Medically Fragile Technology Dependent Waiver. In addition, she is an independent researcher on children’s Medicaid waivers and programs, including the website Kids’ Waivers.

>Robin Blitz, MD, is a board-certified developmental-behavioral pediatrician with expertise in medical home care for children and youth with special health care needs (CYSHCN), shared decision-making, transition to adult care, foster/adopted children, medical complexity, and pediatric palliative care. For 30 years, she provided care, educated clinicians and families, and directed programs. In 2018, Dr. Blitz joined UnitedHealthcare as Medical Director of the Special Needs Initiative, advocating for CYSHCN and helping families navigate healthcare. She works to improve medical, behavioral health, and pharmacy policies, while providing education across the organization. Dr. Blitz is a fellow of the American Academy of Pediatrics (AAP) and the Society for Developmental and Behavioral Pediatrics, serving on the AAP COCWD Executive Committee. She has contributed to organizations including the National Center for Pediatric Palliative Care Homes, Bureau of Indian Education Advisory Board, Make-A-Wish Foundation, and Arizona Governor’s Autism Advisory Committee.

>Armelle Casau, PhD, is the Director of Programs and Partnerships for Family Voices, where she supports alignment across research, policy, family engagement, programs, and partnerships to advance health equity, expand accessibility, and strengthen coordinated systems of care for children and youth with special health care needs.

She has extensive experience in evidence-based policy research, implementation support, cross-sector partnerships, stakeholder engagement, and advocacy from her previous roles as the associate director of child and family health at the Center for Health Care Strategies and as a senior research and policy analyst at New Mexico Voices for Children. Her policy expertise includes early childhood care and education, two‑generation strategies, Medicaid, health equity, health-related social needs, and systems alignment. As a parent of a child with a chronic health condition, she also brings lived experience to her work and a deep personal commitment to elevating family and community voices in policy, program, and systems change.

Her background also includes curriculum design, partnership development, and systems building in informal STEM education (science, technology, engineering, and math) as well as three years with the Peace Corps, focusing on public health outreach in Guinea and science education in the Solomon Islands.

Armelle holds a PhD from Princeton University and a BS from the University of Texas, both in molecular biology. She lives in New Jersey with her husband and two children and loves traveling, hiking, photography, and playing tennis and ping pong. Connect with Armelle Casau on LinkedIn.

>Barbara Ivins is the Program Manager and Clinical Director of Early Intervention Services (EIS) in the Division of Behavioral Health at UCSF Benioff Children’s Hospital Oakland. She completed PhD in biological and clinical psychology at UC Berkeley. As a psychologist and early childhood mental health practitioner, Barbara believes in parents as partners, and that early relationships are foundational, formative and an important focus of intervention for young children and their caregivers. She has been a leader in direct service and multidisciplinary workforce development for over 30 years including teaching for the School of Social Welfare at University of California, Berkeley, and developing integrated training and direct service projects with healthcare, child welfare, public health, early care and education, developmental disability and mental health systems of care throughout northern California.

>Dr. Jenica O'Malley, is a general pediatrician in Syracuse, NY where she was born and raised. She attended medical school at the University of New England College of Osteopathic Medicine in Maine and completed her pediatric training at SUNY Upstate in Syracuse, NY. She has spent her career as a pediatrician working in early childhood development, early relational health, building parent voice in the medical home and building strategies to help buffer the effects of poverty and chronic stress. Dr. O’Malley currently serves as an Associate Program Director for the pediatric residency program at Upstate, and strives to educate residents on the importance of hearing, supporting and uplifting all parent perspectives.

>Heather Bushnoe began as a Parent Leader on the Parent Advisory Council (PAC) for the Early Childhood Alliance (ECA) in Onondaga, New York and then served as a Family Leader on the Governance Body for the Pediatrics Supporting Parents (PSP) initiative for the past three years. She now facilitates the Parent Advisory Council. Heather is involved in this work to support policy and systems change for all children and families. She believes families deserve to be lifted up, not limited. Her daughters EveLynne (10) and Madison (7) are reminders of world she wants to help create, and her angel baby Grace Lynne, who passed away after six precious and impactful minutes in 2014, is the quiet strength behind her commitment. She advocates for systems that hold families with compassion, dignity, and understanding and a world where children are safe, supported, and surrounded by opportunities to grow and thrive.

>Hope Williams-Burt is a Family and Community Relationship Development Consultant who leads the Family Accountability Board (FAB) for the University of California, San Francisco (UCSF), Ready! Resilient! Rising! Network and Benioff Oakland Children’s Hospital, Black Love Opportunity and Outcome Improvement in Medicine (BLOOM). Over the past 12 years, Hope has held various board positions at UCSF around Preterm Birth, maternal health and Early Relational Health. Passionate about community driven work, she has led strategic policy and community development planning to elevate family and community expertise. In 2020, Hope formed Residents Supporting Community, a neighborhood action group, and under her leadership the group created a community-led and budget-controlled neighborhood taskforce in San Francisco. Hope has over 30 years of lived experience educating, advocating, and making room for village voices. Her life lessons and joy being a wife, mother of four children, and LaLa to her grandson, drive her to create change.

>Sarah MacLaughlin is a licensed social worker, parent educator, and author of two award-winning books for caregivers. She has worked with children and families in a variety of educational, training, and support settings for over 30 years. Her current role is the Sr. Training & Technical Assistance Specialist for Pediatrics Supporting Parents at ZERO TO THREE. Ms. MacLaughlin lives in Maine with her family, cat, and small flock of chickens.

Roseani, for the last five years, has dedicated her time to family engagement. Over that time, she supported families of children with special health care needs to access health services and education appropriate for their needs. With more than a decade of direct work with children with autism and related conditions, she has supported families to improve access to services and participation during the process. She is currently a Project Director at Family Voices National, where she focuses on leading our organizational language access plan as well as projects that support inclusion in all aspects of family engagement and family-centered practices. She is a native Spanish speaker from Puerto Rico and mother of twin boys. She has a master’s in Curriculum and Instruction from Arizona State University, a specialty in autism from Complutense University in Spain, and a Bachelor’s degree in Psychology and Mental Health from the University of Puerto Rico.

>Shawnna is a mother to three boys, one of whom has complex medical needs, and over the years has been a foster mom to 13 adults and children with varying medical complexities. She is also a pediatric nurse, focusing on education for clinical team members who care for children with complex medical conditions. Her personal and professional experiences have fueled her passion for family-centered care and the critical importance of including families in every level of decision-making. She is committed to helping healthcare organizations recognize the vital role of family voices when designing and expanding programs to ensure they truly meet the needs of those they serve. Shawnna served as a Family Advisor for the CMC CoIIN, which led to her important work as a Family/Clinician Faculty on the development of a humanistic framework for CMC Cafe Series.

>Bethlyn Vergo Houlihan, MSW, MPH, is dedicated to social justice and health equity, partnering with individuals with complex health and social needs, their families/caregivers, and communities to address systemic inequalities. Her work spans innovation design, implementation, and evaluation, as well as workforce development and strategic partnerships to drive innovation in health and social services delivery and policy.Bethlyn is Project Director at the Center for Innovation in Social Work & Health at Boston University School of Social Work, and Co-Principal Investigator of The Future of Care for CMC Virtual Café Series. She co-edited a Pediatrics supplement (Jan 2024), sharing insights from the Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity (CMC CoIIN). Bethlyn serves on the leadership team for a project on family well-being facilitators for CMC.

>Lenette Serlo is the Founder & CEO of Generation O, The National Organization for Opioid-Exposed Children, the first national movement dedicated to supporting families raising the half million children born with prenatal opioid exposure. A graduate of Michigan State University and an adoptive mother of 4 substance-exposed children, Lenette combines personal lived experience with a diverse professional background to advance both compassion and science in this emerging field.  Under her leadership, Generation O has become a growing voice for caregivers and a trusted source translating complex research into plain English. By spotlighting the long-term consequences of prenatal opioid exposure—including impacts on brain development, learning, and behavior—Lenette is raising awareness, building partnerships, and ensuring that the unique needs of these children are recognized in healthcare, education, and policy.

>Jen Cox, MPA is a nonprofit and small business consultant based in Haiku, Maui. She has enjoyed a steady yet varied career working for nonprofits and small businesses in the arts, the environment, dementia care, and mental health. As of September 2023, Jen serves as the project manager for Kākou for Keiki (K4K), a community collaborative that connects the families of Maui County’s youngest keiki (from birth to age 5) to trustworthy, locally-rooted programs and services. As one of three implementation sites for the Early Childhood Developmental Health Systems: Evidence to Impact Center, K4K is in the process of piloting several collaborative projects all aimed at improving choice and chance for families in Maui County's early childhood ecosystem.

>Kaliko Kaauamo, M.Ed. serves as the family steward alaka’i for Kakou for Keiki, a community collaborative that connects the families of Maui County’s youngest keiki (from birth to age 5) to trustworthy, locally-rooted programs and services. Kaliko is a Native Hawaiian educator, vocalist, heritage farmer, and Hawaiian language advocate. Born and raised on Maui, Kaliko grew up in programs like Kakou for Keiki that helped her single mom reach higher education and new opportunities. As a family steward alaka’i, she blends art, education, and ancestral wisdom to inspire healing, resilience and love of place—believing that when we strengthen our ties to community, culture and language, we uplift our families to move through the world with aloha and confidence.

>Maggie Clark is the senior policy analyst with the Early Childhood Developmental Health Systems: Evidence to Impact Center at ZERO TO THREE. She leads policy and sustainability technical assistance for state and local teams working to improve early childhood systems to meet the needs of all families.  Before joining ZERO TO THREE, Maggie held leadership positions at several national policy organizations, including the Georgetown University Center for Children and Families and the Pew Charitable Trusts. Maggie began her career as a public policy journalist, and she is passionate about centering families in maternal and early childhood health policy and systems building. Maggie lives with her husband and daughter in Washington, DC.

Hannah Mathis, LMSW, is both a disability advocate professionally, but also personally. Growing up with a brother with ASD diagnosed in his later teen years, Hannah has learned to navigate systems and societal stereotypes due to her experiences. Currently, her work lies at Family Connection where she assists families navigating the educational side of special education, helping them feel empowered and educated in decision-making, and supporting them emotionally through her personal and professional experience. Hannah additionally works directly with youth and young adults with disabilities by navigating self-directed IEP’s, community resources, and learning more about decision making options.

>Elizabeth MacInnis, MD, FACP is an Internal Medicine physician with Prisma Health. Dr. MacInnis graduated with BA degree in Spanish Language and BS degree in Biology from Wofford College. She obtained her medical degree at the University of South Carolina School of Medicine in Columbia. She completed residency training in Internal Medicine at Prisma Health where she also served as Chief Resident. She completed a graduate Certificate in Clinical and Translational Research from Clemson University and was recently elected to the Fellowship of the American College of Physicians. Dr. MacInnis is an Assistant Professor of Clinical Internal Medicine at University of South Carolina School of Medicine where she enjoys working with medical students and resident physicians. She is the Medical Director of Center for Adults with Developmental Disabilities at Prisma Health. Finally, she is a primary care physician for adult patients in the Prisma Health system.

>Tracie Hayward is the Director of Evaluation and Family Support at Family Connection of South Carolina. Tracie has been supporting families who have children and youth with special healthcare needs for 18 years and has served on numerous national, state and local advisory committees, including being selected as an AMCHP Family Scholar. She holds a B.S. from York College of Pennsylvania and a M.A. from the University of Nevada, Las Vegas. She lives in Charleston, SC and is a mom of three- all of whom are young adults with disabilities and behavioral health challenges.

>Dr. Ebonie Zielinski, DNP, RN, is the Assistant Director of Research and Practice Initiatives for the Division of Specialized Care for Children (DSCC), which administers Illinois’ Title V Children and Youth with Special Healthcare Needs (CYSHCN) program. She leads efforts to strengthen population health strategies and improve outcomes for CYSHCN through initiatives such as complex care research, pediatric palliative care development, caregiving policy collaboration, and workforce advancement. With over 21 years of nursing experience in acute care and public health, Dr. Zielinski previously served as a senior research specialist for the Colbert/Williams v. Pritzker consent decree, supporting safe transitions for individuals with complex needs. She earned her Doctor of Nursing Practice from the University of Illinois Chicago in 2022, specializing in population health. An advocate and mentor, she serves her community as treasurer for the Black Nurses Association of Central Illinois and mentors first-generation college students.

>Erica Stearns is the statewide Home Care Family Outreach Associate for the UIC-DSCC, where she supports families of CYSHCN. Her lifelong experience with medical complexity, both as a child and now as a parent to two children with complex disabilities, shapes her deep commitment to this work. She has served as chair of Family Advisory Councils at UIC-DSCC and SSM Cardinal Glennon Children's Hospital, and previously worked as a statewide advocate with The Arc of Illinois. Erica is also a cofounder of Caffeinated Caregivers, a virtual network connecting pediatric caregivers with resources, peer support, and research. She is passionate about championing peer support and empowering caregivers to lead change.