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Opening Plenary

 

Learning Together: Finding Common Ground and Language Between Research and Lived Experience

How do we create a common language to talk about research? How do we ensure that individuals with disabilities are a part of the research process from conception through knowledge translation or clinical application? We look forward to exploring these questions and the connection between people with disabilities, their families, and the professionals who carry out research about disabilities during the opening plenary and throughout the Virtual Conference.

Keynote speaker Diana W. Bianchi, MD, Director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development, will share about her leadership at NICHD and her push for more meaningful inclusion of people with disabilities in the research process as well as a stronger connection between clinical and translational research. Following the keynote, NICHD Deputy Director Alison Cernich, PhD will lead a live Q&A session for our network and attendees.

The conversation will continue with a panel discussion led by NPR's Joe Shapiro. The following panelists will lend their unique and important perspectives to the discussion: Angel Miles, PhD, Health and HCBS Policy Analyst at Access Living, Caitlin McCormick, JD, Associate Director of Public Policy at Patient-Centered Outcomes Research Institute, and Vanessa Hiratsuka, PhD, MPH, Co-Director of Research and Evaluation at the University of Alaska Anchorage's Center for Human Development.


Image of a white woman with short wavy blonde hair wearing glasses and a suit  smiling at the camera.
Diana W. Bianchi, MD
Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development


Diana W. Bianchi, MD, is the director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) and head of the Prenatal Genomics and Therapy Section for the Medical Genetics Branch at National Human Genome Research Insitute (NHGRI). She oversees the research on pediatric health and development, maternal health, reproductive health, intellectual and developmental disabilities, and rehabilitation medicine, among other areas. These efforts include managing a staff of approximately 1,400 people and an annual budget of approximately $1.5 billion. Dr. Bianchi serves as an ambassador and spokesperson for NICHD.

Dr. Bianchi is recognized widely for her leadership roles. She spent 23 years at Tufts Medical Center, where she was the founding executive director of the Mother Infant Research Institute, as well as the Natalie V. Zucker Professor of Pediatrics, Obstetrics and Gynecology at Tufts University School of Medicine. Dr. Bianchi also was the vice chair for Pediatric Research at the Floating Hospital for Children, Boston. From 2011 through 2015, she served on the National Advisory Council of NICHD. She is currently editor-in-chief of the international journal Prenatal Diagnosis and is a past president of the International Society for Prenatal Diagnosis and the Perinatal Research Society. She is a former member of the Board of Directors of the American Society for Human Genetics and a former council member of both the Society for Pediatric Research and the American Pediatric Society. She was elected to membership in the National Academy of Medicine (formerly the Institute of Medicine) in 2013.

 

Image of a white woman with shoulder length brown hair wearing a sweater and blouse smiling a the cameraAlison Cernich, PhD
Deputy Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)

Alison Cernich, PhD, became the Deputy Director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) in September 2019. In this role, she assists the NICHD Director in overseeing the institute's programs supporting research on child development, developmental biology, nutrition, HIV/AIDS, intellectual and developmental disabilities, population dynamics, reproductive biology, contraception, pregnancy, and medical rehabilitation.

Prior to this position, Dr. Cernich was the Director of NICHD's National Center for Medical Rehabilitation Research (NCMRR), where she managed a $72 million research portfolio aimed at improving the health and wellbeing of people with disabilities. As NCMRR Director, she led the development and revision of the congressionally mandated NIH Research Plan on Rehabilitation (PDF 443 KB), an effort that included coordination with 17 institutes and centers and multiple external stakeholders. She also served on multiple interagency strategic planning committees and government oversight committees for research initiatives in the federal government relevant to disability and rehabilitation research.

 

Anjali J. Forber-Pratt, Ph.D.
Director, National Institute on Disability,
Independent Living and Rehabilitation Research (NIDILRR)

Anjali J. Forber-Pratt, Ph.D. is a disability activist, a two-time Paralympian and the Director of the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR) in the Administration for Community Living. As a researcher, her primary area of work relates to disability identity development. As a wheelchair-user for over 35 years, Dr. Forber-Pratt is nationally and internationally recognized as a disability leader and mentor. As a Paralympic medalist in the sport of wheelchair racing, she has dedicated her life to helping others recognize their potential. Globally, she is involved with disability advocacy efforts related to access to employment, education and sport through public speaking and media appearances.  She was a White House Champion of Change in 2013 and the American Psychological Association awarded her the 2020 Citizen Psychologist Award for Advancing Disability as a Human Rights and Social Justice Issue Award.

 

Image of man with grey hair and glasses wearing a suit jacket, shirt and tie smiling at the camera.Joe Shapiro
Correspondent, NPR Investigations

Joe Shapiro is a correspondent on NPR's Investigations Unit. His series "Abused and Betrayed" revealed the epidemic of sexual assault of people with intellectual disabilities. In 2020, he wrote about denial of health care to people with disabilities during the pandemic. Other investigations: "Guilty and Charged" exposed how rising court fines and fees create an unequal system of justice for the poor and modern-day "debtors' prisons"; stories on double-cell solitary confinement, the practice of putting two men in one cell smaller than a parking space; a series that found dozens of cases where parents and caregivers were wrongly convicted of killing children, leading to one Texas man's release from prison; a series on the government's failure to fulfill the promise of the Olmstead decision to get elderly and disabled people out of nursing homes; and stories on the failure of colleges and universities to punish sexual assault that led the Obama Administration and Congress to pass new rules. Shapiro is the author of NO PITY: People with Disabilities Forging a New Civil Rights Movement.

 

 Image of a woman with her dark hair pulled back wearing a blue blouse and smiling at the camera. Angel Miles, PhD
Health/HCBS Policy Analyst, Access Living

Angel received her doctorate in women's studies at the University of Maryland College Park. After completing her postdoctoral fellowship in the College of Applied Health Sciences at the University of Illinois at Chicago, she became Healthcare/Home and Community Based Services Policy Analyst at Access Living. She is responsible for monitoring disability rights developments in healthcare and home and community-based services, and facilitating systems advocacy efforts through an intersectional lens.

 

 

 Image of a woman with long brown hair wearing a black blouse and smiling at the camera. Caitlin McCormick, JD
Associate Director of Public Policy, Patient-Centered Outcomes Research Institute (PCORI)

Before joining PCORI, McCormick was an associate director and clinical instructor of law with the Center for Health Law and Policy Innovation at Harvard Law School. She taught health law and policy to law students, focusing on the legislative process and tools for advancing policy goals in Congress. Before Harvard, McCormick was a policy attorney with the health policy practice groups at Akin Gump Strauss Hauer & Feld LLP and Patton Boggs LLP in Washington, DC, where she advised healthcare companies and industry coalitions on a wide variety of legislative, regulatory, and government oversight matters. McCormick earned her BA in international affairs from the George Washington University, and a JD from the Boston University School of Law.

 

 Image of a woman with brown shoulder length hairing wearing black blouse smiling at the camera Vanessa Hiratsuka, PhD, MPH
Co-Director of Research and Evaluation, Center for Human Development, University of Alaska Anchorage

Dr. Hiratsuka (Diné/Winnemem Wintu) is mother of two, a wife, and a public health researcher with 20 years of mixed methods research experience within the Alaska tribal health system. Dr. Hiratsuka is an assistant professor and co-director of research and evaluation at the University of Alaska Anchorage Center for Human Development. She received a bachelor's degree in human biology from Stanford University, a master's degree in public health practice from the University of Alaska Anchorage, and a doctoral degree in public health from Walden University. Her community engagement work has spanned regional, national, and international efforts. Dr. Hiratsuka has extensive experience coaching and mentoring community and university-based researchers and practitioners in ethical, social, and legal implications of genomic research and clinical and translational research and developing culturally adapted chronic disease and behavioral health interventions in tribal health settings. Her research interests include ethical, social, and legal implications of genomic research and precision medicine; cultural adaptation of chronic disease and behavioral health interventions and engagement of Indigenous people and self-advocates experiencing intellectual and developmental disabilities in the planning, conduct and dissemination of evaluation and research projects.