Joan Mary Jasien

Variation in Neurodegeneration Linked Brain Regions in Young Adult APOE ε4 Carriers with Spina Bifida - Pediatric Neurology Faculty and Resident Conference · August 4, 2025 Lecture Duke Pediatric Neurology Research presentation highlighting neuroimaging findings in young adults with spina bifida and APOE ε4 genetic risk.

Invited Presenter, Audit Trail of Community Engagement in Pediatric Trials Network Research · May 22, 2025 National Scientific Meeting Invited presentation at the NICHD Pediatric Trials Network Investigator Meeting describing the development, implementation, and iterative refinement of a community engagement pilot, including lessons learned and methodological considerations relevant to Pediatric Trials Network research, delivered to an audience that included NIH and PTN leadership and staff, study teams from up to 15 sites, and invited community and parent leaders.

Co‑Developer and Co‑Presenter, “Fixing the Disconnect” – Family Engagement in Research Course - Family Engagement in Research Course · November 23, 2023 Invited Talk McMaster University / CanChild Centre for Childhood Disability Research, Kids Brain Health Network Co‑developed and co‑presented a session with parent partners for an international audience as part of the Family Engagement in Research Course. The presentation focused on identifying communication gaps between research teams and families and sharing practical strategies to support bidirectional learning and collaborative engagement in clinical research.

Clinical Evaluation of Adults with Intellectual and Developmental Disabilities: Baseline Cognitive and Adaptive Functioning for Internists. - Internal Medicine Grand Rounds · March 2, 2023 Invited Talk Yale University School of Medicine

Choosing Child Neurology and Neurodevelopmental Disabilities: Rewards and Challenges - Career Development Panel · February 1, 2022 Interview Kennedy Krieger Institute/Johns Hopkins

Supporting Individuals with Intellectual Disabilities and Their Families: Practical Guidance for Medical Assistants - Educational Session · November 9, 2021 Invited Talk American Association of Medical Assistants

Cognitive and Motor Function in Adults with Spina Bifida Myelomeningocele: A Pilot Study · September 16, 2021 International Meeting or Conference International Federation for Spina Bifida and Hydrocephalus

Assessing Cognitive and Adaptive Skills to Support Transition in Neurodevelopmental Disabilities - Med Peds Visiting Professor Lecture · June 3, 2021 Invited Talk Yale University School of Medicine

A Career in Pediatric Neurology and Neurodevelopmental Disability - Pediatrics Interest Group · August 21, 2019 Invited Talk Campbell University School of Osteopathic Medicine

Health Care Issues for Young Adults with Down Syndrome - Med‑Peds Resident Educational Conference · May 20, 2016 Invited Talk Virginia Commonwealth University

Understanding the Natural History of Alternating Hemiplegia Disorders - Alternating Hemiplegia Disorders Parent Symposium · May 17, 2016 Invited Talk Alternating Hemiplegia Community

Growing Up with Alternating Hemiplegia of Childhood: Implications for Transition to Adult Care - Fourth Symposium on ATP1A3 in Disease · August 27, 2015 National Scientific Meeting ATP1A3 Research Consortium

Transition to Adulthood; Adolescents with Neurological Conditions; Aging with Neurodevelopmental Disabilities - Pediatric Neurology and Developmental Medicine Update Course · February 2, 2015 Instructional Course, Workshop, or Symposium Duke University Medical Center Moderator and speaker leading the Development section of a regional CME course.

Aging and Disability: Systems of Care, Research, and Clinical Issues - Core Course Lecture · February 20, 2014 Invited Talk Kennedy Krieger Institute / Johns Hopkins University

Aging with Neurodevelopmental Disabilities - Johns Hopkins Division of Geriatric Medicine and Gerontology Grand Rounds · May 5, 2013 Invited Talk Johns Hopkins Division of Geriatric Medicine and Gerontology

Service to the Profession

Invited Leadership in National Community Engagement Initiative, NICHD–Pediatric Trials Network (PTN) National Scientific Meeting · February 2, 2026 - July 31, 2026 Community Development Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), Pediatric Trials Network Leads a national, bidirectional community engagement initiative across 15 Pediatric Trials Network study sites, building on an IRB approved pilot (Engagement of Families of Children with Down Syndrome) independently developed beginning in 2022 in partnership with parent leaders and Duke Clinical and Community Partnerships for Health (CCPH). Leads national presentations, site wide training calls, and mentoring of locally driven engagement projects, with dissemination of strategies to improve research participation across different communities.

Invited Featured Research Contributor for Peer‑Reviewed Article Audio Dissemination, SciPod · 2026 Research SciPod Invited to develop an audio science communication feature focused on the peer‑reviewed article “Variation in Neurodegeneration‑Linked Brain Regions in Young Adult APOE ε4 Carriers With Spina Bifida” (Annals of the Child Neurology Society, 2025).

Invited Parent Organization Educational Contributor – National Educational Resource Development · September 21, 2025 Community Development Child Neurology Foundation (with the Spina Bifida Association) Invited by the Medical Director of the Spina Bifida Association to author neurology focused caregiver education materials for parents and caregivers of individuals with spina bifida, distributed nationally through the Child Neurology Foundation.

Invited Strategic Planning Consultant · September 2, 2025 Consulting Community Campus Partnership for Health (CCPH) Invited consultant for a strategic planning initiative supporting CCPH leadership as the organization refined its mission and strategy to better serve community and academic partners.

Recruitment Strategies for PTN DS: Site‑Level Implementation and Outcomes From the Only Site to Enroll and Retain Participants · May 22, 2025 Consulting Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), Pediatric Trials Network Invited national presentation describing recruitment and retention strategies implemented as Duke site Principal Investigator for the PTN DS trial. Duke was the only participating site to successfully enroll and retain three participants; approaches, workflows, and outcomes were shared with the NICHD Pediatric Trials Network.

NIH Conference Chair and Invited Presenter, NICHD PTN DS Meeting · May 22, 2025 Administration Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), Pediatric Trials Network Appointed NIH Conference Chair for the Spring 2025 NICHD PTN DS Meeting in recognition of leadership in establishing a community engagement pilot. Led planning and content curation for a national meeting convening 15 Pediatric Trials Network study teams, NIH staff, and PTN leadership. Designed programming to strengthen community engagement by collaborating with partner organizations to develop educational content. Served as an invited presenter, sharing the pilot study audit trail and proposal in collaboration with research and community partners.

Elected Position: Professional Advisory Council Member · March 2025 Administration National Spina Bifida Association Elected member of the Professional Advisory Council, advising the Spina Bifida Association Board of Directors and executive leadership on initiatives to improve care delivery, research priorities, and health outcomes for individuals with spina bifida.

Elected Member, Transition and Adult Care Committee · March 2025 Administration National Spina Bifida Association Contribute clinical and research expertise to address challenges in healthcare transition and adult care for individuals with spina bifida, informing organizational initiatives and priorities.

Consultative Review of a Community‑Engaged Research Pilot · April 22, 2024 Professional Development Presented a pilot draft focused on principles and practical approaches to community engaged research across different populations to the Duke Community Engaged Research Initiative and the Duke Clinical and Translational Science Institute to solicit expert input. Feedback informed refinement of the pilot prior to further development and implementation.

Co‑Organizer and Co‑Leader (Invited Webinar), Family Engagement in Research Course · November 23, 2023 Research McMaster University / CanChild / Kids Brain Health Network. Community‑engaged webinar addressing gaps between researchers and families by integrating parent perspectives into research education, co‑developed with two parents of children with Down syndrome for national and international audiences.

Taste of GiGi’s Playhouse: Community Advocacy Event · July 22, 2023 Community Outreach Gigi's Playhouse Participated in multiple inclusive advocacy events supporting Hispanic and Spanish speaking families of children with Down syndrome.

Program Organizer and Facilitator , Inclusive Outdoor Community Programs · March 24, 2023 Community Outreach 03/24/2023; 04/03/2024; 10/11/2025
Organized and facilitated inclusive outdoor community programs on a family homestead as a family led initiative for families of children with Down syndrome and pediatric patients with cerebral palsy. Activities incorporated therapeutic animal interaction and adaptive play, with an emphasis on accessibility and whole family participation.

Developer, NIH‑Hosted Educational Resources for Research Participation · 2023 Research National Institutes of Health (NIH), Pediatric Trials Network Developed educational resources, including videos and social stories, to enhance study team comfort and preparedness in implementing research procedures with participants and families. Resources were hosted on an NIH platform and used by Pediatric Trials Network study teams to support communication, reduce procedural barriers, and promote successful completion of study activities.

Participant · October 22, 2022 Event Participation Participated in a community fundraising and advocacy event supporting spina bifida research and public awareness.

Invited Speaker and Moderator · 2022 Administration American Academy for Cerebral Palsy and Developmental Medicine (AACPDM), Adults with IDD Special Interest Group Invited speaker and moderator for the AACPDM committee focused on adults with cerebral palsy, contributing clinical expertise and facilitating professional discussion on adult care models.

Consultant, StrideBio · 2021 Consulting Provided clinical expertise related to neurodevelopmental conditions and outcome considerations.

Clinical Expert, National Down Syndrome Scientific Consortium · 2020 - 2021 Consulting LuMind IDSC Foundation & National Down Syndrome Society Provided expert clinical guidance on behavioral and autism‑related comorbidities in individuals with Down syndrome as part of a national scientific consortium. Contributed recommendations incorporated into the NIH 2020 Down Syndrome Research Plan. This consulting work also informed and contributed to a peer‑reviewed publication addressing medical and neurologic issues in Down syndrome.

Role/Title: Consultant, NC START · 2020 - 2022 Consulting North Carolina START (Systemic, Therapeutic, Assessment, Resources, and Treatment) Served as a clinical expert supporting a statewide program focused on crisis prevention, intervention, and systems coordination for individuals with intellectual and developmental disabilities.

Section Leader; Program Planner; Designated Liaison; Course and Conference Submission Leader; Mentor · 2020 - 2025 Committee Service American Academy of Neurology (AAN) Provided sustained national committee leadership within the American Academy of Neurology focused on adults with intellectual and developmental disabilities. Served as Section Leader and program planner for AAN educational initiatives, including the Annual Meeting; acted as AAN Designated Liaison to the Consortium of Neurology Advanced Practice Providers; led development and submission of CME and national conference proposals addressing neurologic complications and healthcare disparities in adults with IDD. Invited to serve as sole physician representative on a national AAN sponsored medical education grant and mentored an adult neurology resident in national conference agenda development and professional education planning.

Camp Counselor Training Session · July 21, 2019 Other Victory Junction Camp Provided an educational session for camp counselors on spina bifida diagnosis, associated conditions, and potential complications relevant to camp settings.

Clinical Consultant for Desipramine in Infantile Neuroaxonal Dystrophy (INAD) Study · 2019 - 2019 Consulting Served as a clinical consultant on a national therapeutic study evaluating desipramine in infantile neuroaxonal dystrophy, providing focused subject matter expertise in hypertonicity and associated movement abnormalities relevant to study population characterization and clinical considerations.

Thought Leader and Study Consultant · 2019 - 2022 Consulting Eunice Kennedy Shriver National Institute of Child Health and Human Development, Pediatric Trials Network Provided expert consultation and thought leadership during preparation and planning phases of the Pediatric Trials Network Down syndrome study.

Invited lecturer: Adult Down Syndrome Education Session · May 21, 2016 Community Outreach Down Syndrome Association of Greater Richmond Delivered invited community lecture addressing medical issues and health promotion for adults with Down syndrome.

Senior Literature Reviewer, Adult Down Syndrome Health Care Guidelines · 2015 - 2019 Editorial Activities Conducted comprehensive literature reviews to support development of adult healthcare clinical guidelines for individuals with Down syndrome; this work contributed to a peer‑reviewed publication.

Service to Duke

Invited Divisional Representative, Pediatric Neurology (Clinical Organization) · April 23, 2026 Committee Service Invited by the Pediatric Neurology Division Chief to serve as one of two divisional representatives contributing to future inpatient and outpatient space planning for the new North Carolina Children’s Hospital, with specific emphasis on optimizing infrastructure to support rehabilitative and multidisciplinary care.

Community Engaged Research Across Different Populations: Pilot Design and Iterative Refinement · May 11, 2023 Professional Development AME Zion Health Equity Advocates & Liaisons (HEAL), in partnership with the Duke University Executive Committee Presented the same community engaged research pilot within a community health equity context to solicit consultative input. Feedback informed iterative refinement of the pilot.

Member, Duke Neuroscience Think Tank (University) · January 1, 2023 - December 31, 2023 Committee Service Served as a member of the Duke Neuroscience Think Tank, contributing clinical and scientific expertise to institutional discussions on neuroscience priorities, collaboration, and strategic direction.

Principal Investigator and Founding Lead, Community‑Engaged Research Pilot, Engagement of Families of Children with Down Syndrome Pilot · May 23, 2022 Research Duke University Medical Center, in partnership with Duke Clinical and Community Partnerships for Health (CCPH) and GiGi’s Playhouse Conceptualized beginning in 2022 and launched as an IRB‑approved pilot in March 2026. Conceived, developed, and lead a community‑engaged research collaboration with Community–Campus Partnerships for Health (CCPH), parent leaders, and families from different communities focused on co‑designing principles and practices to strengthen engagement of families in Down syndrome research. This foundational pilot informed and directly supports subsequent national Pediatric Trials Network (PTN) community engagement efforts.

Faculty Interviewer and Search Committee Member (University) · January 1, 2017 - March 6, 2026 Committee Service Duke University Medical Center • Duke Developmental Behavioral Pediatrics
• Duke Pediatric Orthopedic Surgery
• Duke Pediatric Neurosurgery
• Duke Pediatric Neurology
• Duke Physical Medicine & Rehabilitation (Pediatric and Adult)
Served as faculty interviewer and search committee member across multiple Duke clinical departments, contributing to recruitment, candidate evaluation, and departmental hiring decisions for faculty positions.

Co Founder and Co Director; Clinical Program Leader · 2017 Administration Co founded and serve as Co Director of Duke based clinical programs providing specialized care for individuals with cerebral palsy across the lifespan, including adult cerebral palsy and adult spina bifida. Led expansion of multidisciplinary clinical care for children and young adults with cerebral palsy, supporting integration of rehabilitation therapies and surgical specialties and development of coordinated, interdisciplinary care models. Currently leading development of a pediatric movement disorders clinical program, in collaboration with Duke Neurosurgery and therapy disciplines, contributing to interdisciplinary program design, institutional planning, and definition of clinical scope for children with complex motor and tone related conditions.

Board Member and Planning Committee Member for the Lenox Baker Children’s Hospital Foundation (University) · June 1, 2016 Committee Service Serve as a member of the Lenox Baker Children’s Hospital Foundation Fund Board and its Planning Committee, contributing to strategic planning, fundraising priorities, and programmatic initiatives supporting children with complex medical needs.

Leadership & Clinical Positions

Site Principal Investigator, PTN‑HYP01 ("Guanfacine for Hyperactivity in Children with Down Syndrome")
January 2024 - Present
Provides scientific, regulatory, and operational leadership for Duke's participation in the NICHD‑funded DS‑PTN multicenter clinical trial evaluating guanfacine for hyperactivity symptoms in children with Down syndrome; oversees Duke study implementation, study team supervision, compliance, and protocol execution. Sponsored by NICHD and INCLUDE.

Co‑Founder and Co‑Director, Multidisciplinary Spina Bifida Clinic - Young Adults and Adults
03/2025-Present

Co‑Founder and Co‑Director, Multidisciplinary Cerebral Palsy Related Condition Clinic - Young Adults and Adult
04/2024-Present

Co‑Founder and Co‑Director, Multidisciplinary Cerebral Palsy-Related Conditions (CPRC) Clinic - Children
02/2020-Present

Co‑Director, Multidisciplinary Spina Bifida Clinic - Children
07/2017-Present

Section Head & Founder/Co‑Director, Neurodevelopmental Disabilities Program
07/2017-Present

Director, Cerebral Palsy Clinic-Children
07/2017-02/2022

Academic & Administrative Activities

National Lead, Pediatric Trials Network Community Engagement Initiative
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), Pediatric Trials Network -- 2026-Present
Appointed to lead this national initiative based on prior work since 2022 developing a community engagement pilot. In this role, I convene and guide up to 15 Pediatric Trials Network study sites through multiple bidirectional learning cycles focused on community‑engaged research. I design meeting agendas, facilitate cross‑site dialogue, and invite external partners, including Community‑Campus Partnerships for Health (CCPH), to contribute expertise and tools that support meaningful engagement with different populations and encourage broader participation in NICHD‑ and PTN‑sponsored clinical research.

Co‑Founder and Program Lead, Pediatric Movement Disorders and Neuromodulation Program
Duke University Medical Center -- 2025-present
Invited by Duke Neurosurgery, in my role as a neurologist with expertise in dystonia, to collaborate in the early development of a pediatric movement disorders and neuromodulation program focused on hyperkinetic and dystonia syndromes. Program development includes neuromodulation approaches such as deep brain stimulation and other emerging technologies. Supported by foundation funding, I engaged in direct clinical knowledge exchange with an internationally recognized neuromodulation program, with ongoing collaboration to inform evidence‑based program development at Duke. Current activities include candidate identification, standardized video‑based movement assessments, interdisciplinary case review, and presentation of cases at the Duke Adult Movement Disorders DBS Case Conference.

Conference Chair, NICHD Pediatric Trials Network Down Syndrome Investigator Meeting
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) -- 2025
Appointed Conference Chair for the national NICHD PTN‑DS Investigator Meeting, providing leadership in meeting design, content curation, and integration of community‑engaged research principles across 15 study sites.

Founder and Program Designer, Multidisciplinary Neurodevelopmental Disability Care Models
Duke University Medical Center -- 2020-present
Founded and co‑directed multidisciplinary neurodevelopmental disability programs integrating nurse coordinators, social work, physical, occupational, and speech‑language therapy, registered dietitian, urology, orthopedic surgery, neurology, neurosurgery, and rehabilitation to deliver coordinated, lifespan‑focused care.

Organizer and Host, Pediatric Grand Rounds (Caring for Medically Complex Children)
Duke University Medical Center -- 2019-present (biannual series)
Responsible for program development, speaker recruitment, and moderation of a recurring biannual grand rounds series focused on care of medically complex children.

Expert, Advisor, and Educator, Duke Adult Spina Bifida Patient Programming ("Learning to Thrive")
Duke University Medical Center -- 2021-2024
Contributed to educational content, clinical focus areas, and patient‑centered programming for adults with spina bifida.

Expert Advisor, Duke Transition Groups for Individuals with Spina Bifida
Duke University Medical Center -- 2021-2023
Provided guidance on transition planning and models of adult care for individuals with spina bifida.

Neurological Expert, Duke Telehealth Neurologic Exam Module
Duke University Medical Center -- 2022
Contributed pediatric neurology expertise to the development of standardized virtual neurologic examination training materials for institutional telehealth education.

Clinical Summary

Founder and Co‑Director, Multidisciplinary Cerebral Palsy–Related Conditions (CPRC) Clinic for Children (2023–Present)
Provide specialty neurologic care within a multidisciplinary clinic integrating rehabilitation therapies, speech‑language pathology, nutrition, social work, orthopedic surgery, neurosurgery, and physiatry to address complex neurodevelopmental conditions related to cerebral palsy.

Founder and Co‑Director, Multidisciplinary CPRC Clinics for Young Adults and Adults (2024–Present)
Provide longitudinal neurologic expertise within multidisciplinary clinics for young adults and adults with cerebral palsy–related conditions, supporting continuity of specialty care across the lifespan.

Co‑Director, Multidisciplinary Spina Bifida Clinic for Children (2017–Present)
Provide expert neurologic care within a multidisciplinary pediatric clinic, supporting coordinated management of complex neurologic and medical needs.

Founder and Co‑Director, Adult Multidisciplinary Spina Bifida Program (2024–Present)
Founded and co‑directed a multidisciplinary adult spina bifida program focused on coordinated neurologic care, transition‑focused services, and longitudinal management of complex medical needs.

Clinical Lead, Multidisciplinary Care for Hyperkinetic and Hypertonic Disorders in Cerebral Palsy and Related Conditions (2023–Present)
Serve as clinical lead for neurologic evaluation and management of hyperkinetic and hypertonic dystonia in children, young adults, and adults with cerebral palsy and related neurodevelopmental conditions.

Duke Initiatives

Muser Mentor