2024 CVI Conference: Building Meaningful Recognition

Dr. Patricia Musolino is a critical care and vascular neurologist with expertise in white matter and cerebrovascular disorders. She is assistant professor of neurology at Harvard Medical School and the co-director of the pediatric stroke and cerebrovascular service at Massachusetts General Hospital. Dr. Musolino clinical and research expertise revolves around the translation of discoveries in human genetics to clinical application in white matter and cerebrovascular disorders. Following training in neurosciences, imaging and molecular biology acquired during her MD and PhD in her native Argentina and post-doctoral training at Harvard.

Dr. Musolino completed dual training in pediatric and adult neurology with specialization in critical care and stroke at Massachusetts General Hospital. Dr. Musolino’s laboratory focuses on leveraging insights from neuroimaging and gene-editing tools to understand how single genes mutations alter blood brain barrier and cerebrovascular function and develop therapies to improve the quality of life of patients with rare neurological disorders. This novel approach has led to multiple high impact publications and the development of pre-clinical tools to develop gene targeted therapies for single gene disorders causing neuroinflammation and stroke at a young age. Working hand to hand with patients and advocacy groups

Dr. Musolino is also developing an international network and resources to maximize the life potential of children and young adults affected by these disorders. Dr. Musolino’s is the recipient of several awards from NINDS, the Hearst and Child Neurology Foundation, MGH Executive Committee on Research and the 2017 Herbert Pardes Clinical Research Excellence Award from the National Clinical Research Forum for the first gene therapy trial in a cerebral demyelinating disorder of childhood.

Mara Yale, PhD leads the Pediatric Stroke and Brain Injury Education Program at Massachusetts General Hospital, reaching an international audience. She co-chairs the Parent Council for I-ACQUIRE (a phase 3 clinical trial for constraint-induced movement therapy) and co-leads CP Soccer New England. Mara brings scientific inquiry and collaboration to her work based on prior careers in geophysics and software engineering. Mara also has a private practice as a nervous system educator, is a Guild Certified Feldenkrais Practitioner, Somatic Experiencing Practitioner, has trained in Hand-in-Hand Parenting, holds a PhD in geophysics, and played Division I ice hockey. She lives near Boston with her two children, one of whom had a perinatal stroke.

Professor John Ravenscroft, PhD (Chair of Childhood Visual Impairment) is a Psychologist, Educationalist, and uses philosophy into his work. Professor Ravenscroft is Director of the Scottish Sensory Centre, which provides career Long Professional Development for Teachers of Children with Sensory Impairment. He is based at the Moray House School of Education and Sport, University of Edinburgh and he is also the current Editor in Chief of the British Journal of Visual Impairment. He is the President of the International Council for Educators of Children with Visual Impairment (ICEVI) Europe) and lectures on cerebral visual impairment, inclusive education as well as research methods. He is known for his work on cerebral visual impairment and his “Conversations about CVI” have been views thousands of times on YouTube. Professor Ravenscroft is often found on twitter and welcomes any discussion about the nature of representation.

Marguerite has over 20 years of service in the field of visual impairments, multiple disabilities and Deafblindness—as Lead Teacher of the Deafblind Program at Perkins, as a classroom teacher and as a specialty early intervention provider for children who were Deaf or hard-of-hearing. She is now the Executive Director of the Deafblind Program. Marguerite received her Master of Education degree from Boston College in severe special education with a specialization in deafblindness.

While at Boston College, Marguerite was awarded the Helen Keller Fellowship. In 2019, Marguerite received her second master’s of education degree by completing the TVI program through the University of Massachusetts, Boston and was in the first cohort of students pursuing the CVI Certification through UMASS Boston. Additional degrees and certifications include a Bachelor of Science degree in Speech-Language Pathology/Audiology from Northeastern University and a graduate certificate through Gallaudet University for the completion of the Deaf and Hard of Hearing Infants, Toddlers and their Families: Collaboration and leadership Interdisciplinary program. Marguerite first became interested in CVI in 2010 after several of her students were diagnosed with CVI.

From there, she pursued professional development with practitioners, researchers and mentors in the field. These learning opportunities have allowed her to develop an inclusive and comprehensive approach to evaluating students with CVI and implementing unique teaching strategies. Marguerite has led multiple trainings on the impact of deafblindness and CVI-related content through Perkins eLearning webinars and courses, Perkins International and professional conferences.

Rachel Bennett is a Director at the CVI Center at Perkins, where she leads CVINow.org and parent advocacy and support. As a parent to Henry, who has CVI and other disabilities, she knows the duality that comes with being a disability parent—feeling overwhelming love and, at the same time, grief and pain. In 2020, Rachel completed UMass Boston’s CVI Certificate program. Before joining Perkins, Rachel was a middle school special educator and secondary instructional specialist in Maryland.

Nai is an Assistive Technology Trainer, Braille Instructor, American Sign Language (ASL) Interpreter, and specializes in working with DeafBlind individuals of all ages. Nai holds a BA in ASL Interpretation from Gallaudet University. Nai is an adult with CVI and offers private consulting to adults with CVI, children with CVI and their families, and blindness professionals interested in better understanding their CVI clients. In their free time, Nai enjoys writing music and going for walks in nature.

Matt Tietjen is an education consultant and teacher of students with visual impairments. Matt earned his undergraduate degree at Cornell University. He became certified in special education certification at Southern Connecticut State University. He received his certification in teaching students with visual impairments from UMASS Boston, where he also earned his Master’s in Education. Matt specializes in working with children who have cortical/cerebral visual impairment (CVI).

He developed the What’s the Complexity Framework (APH Press) out of his conviction that children with CVI deserve a visually accessible school day. Matt is passionate about teaching families and educators about CVI and partnering with them to create person-centered educational programs. Matt’s What’s the Complexity Framework appears as Chapter 4 in “Cortical Visual Impairment: Advanced Principles,” edited by Christine Roman-Lantzy. Matt presents internationally on CVI and teaches CVI graduate courses through UMASS Boston, Perkins School for the Blind, and Fitchburg State University. Matt, along with two co-authors, is currently writing a book on academic accommodations for students with CVI (Perkins Publications).

Ilse Willems is a CVI Project Coordinator at the CVI Center at Perkins. She has worked at Perkins for over 11 years, working with students with visual impairments, dual sensory loss, and multiple disabilities. Ilse holds a Bachelor’s in Child Development and Wellbeing from the College of the Holy Cross, a Masters in Severe Special Education with a concentration in Deafblindness from Boston College, and a Masters in Teacher of Students with Visual Impairments (TVI) with a certificate in Cortical/Cerebral Visual Impairment from UMass Boston. Ilse is currently on the Executive Board as a Greater Boston representative for AMESVI, the Association of Massachusetts Educators for Students with Visual Impairments.

Kaitlyn is the Product Manager at the CVI Center at Perkins School for the Blind, where she manages the development of several products, services, and resources around CVI. Kaitlyn collaborates with the rest of the CVI team to identify needs of the CVI community, design innovative outreach materials, and monitor the usability and effectiveness of the products that the team develops and launches. In this role, Kaitlyn plans to help propel the CVI Center’s mission of spreading awareness, leading outreach initiatives, and furthering CVI research.

Kaitlyn has spent her educational and professional career honing skills in product development, user experience research, data analysis, and design thinking. Her background spans across multiple industries, including education, medical device development, and public media.  In each pursuit, the common thread is her drive to improve products by understanding the learning process and how it uniquely impacts individuals’ interactions with the world. Kaitlyn is thrilled to bring all of these interests together as Product Manager in the CVI Center at Perkins.

Kaitlyn holds an M.S. degree in Human Factors Engineering from Tufts University, as well as a B.A. in Child Development & Spanish from Tufts University.

Maurice Belote has worked exclusively in the field of deafblindness for 41 years. Maurice began his career as a home/hospital and classroom teacher and then served as Project Coordinator of California Deafblind Services at San Francisco State University from 1992 until his retirement in 2021. During that time, he also served as adjunct faculty for two four-year personnel preparation grants at SFSU training teachers of students who are deafblind. With his CDBS team, Maurice also developed an intervener certificate program through the SFSU College of Professional and Global Education to prepare interveners to effectively support communication and curricular access for deafblind students in school and community settings. He is currently adjunct faculty with two university teacher training programs and also serves as Co-Chair of the National Coalition on Deafblindness. He is a frequent speaker at national and international meetings and, in 2021, was awarded the Anne Sullivan Medal for his work on behalf of deafblind students and their families.

Dr Nicola McDowell is the founder and creator of the Austin Assessment, a screening app for cerebral visual impairment, and a Senior Lecturer in the Institute of Education, Massey University, New Zealand. Her research interests include understanding and supporting children and young people who have cerebral visual impairment, empowerment of children and their parents/caregivers and equity in education. Nicola also regularly shares both her research and personal experience of cerebral visual impairment through presentations and blogs, with a focus on improving outcomes for others with the condition.

Rachel Bennett is a Director at the CVI Center at Perkins, where she leads CVINow.org and parent advocacy and support. As a parent to Henry, who has CVI and other disabilities, she knows the duality that comes with being a disability parent—feeling overwhelming love and, at the same time, grief and pain. In 2020, Rachel completed UMass Boston’s CVI Certificate program. Before joining Perkins, Rachel was a middle school special educator and secondary instructional specialist in Maryland.

Kathryne a supply planner in the chemical industry and a parent of 3 children including a child with CVI and multiple disabilities. Kathryne runs a support group for parents and professionals in Louisiana who advocate for improved educational outcomes for children with CVI and helped Louisiana School for the Visually Impaired and Louisiana AER bring the first CVI training to Louisiana in 2018. Kathryne is a graduate of Louisiana Partners in policymaking and served as chairperson for the Louisiana State Interagency Coordinating Council for early intervention.

Mara, an accomplished graduate of Cornell University and the Benjamin N. Cardozo School of Law, is not only a seasoned advocate for children and youth with disabilities but, more importantly, a devoted mother. Her personal journey as the parent of a DeafBlind+ son attending Perkins School for the Blind is the driving force behind her impassioned advocacy. Mara’s impactful advocacy extends beyond the personal realm, reflected in her successful policy work that has garnered recognition and awards.

She has authored legislation, notably passed at the state level, and received honors for her dedication to enhancing the lives of disabled students. As the Chief Operations Officer for Texans for Special Education Reform and a board member of the Autism Society of Texas as well as Texas Parent to Parent, Mara leverages her experiences and achievements to bring about positive systemic change. Her deep understanding as a mom who has navigated the challenges of obtaining appropriate diagnoses and eligibility for her child with CVI further amplifies her commitment. Mara’s unique combination of personal experience, successful policy initiatives, and accolades makes her a powerful force in ensuring that no other family faces similar obstacles on their journey.

Ali Mahady M.S., is the Manager of CVI Outreach and Engagement at the CVI Center, and is part of the CVI Now team. She is the mother of Weston, who is a medically complex child with CVI and other disabilities. Ali understands the importance of children obtaining an early diagnosis of CVI and the need for individualized accommodations for children with CVI. Ali has a background in advocacy and volunteer work for children with disabilities. In 2021, she was appointed by the Governor to the Massachusetts Rare Disease Advisory Council, and she has served on several other advisory councils that support children with rare diseases and disabilities. Prior to joining Perkins, she worked for the federal government.

Lacey is the CVI Parent Community Manager at CVI Now and previously worked as a CVI Project Coordinator for the CVI Center at Perkins School for the Blind. Lacey has worked closely with young children with visual impairments, multiple disabilities, rare diseases, and dual sensory loss providing consult and support to the student, families, and their teams. Lacey has a Bachelor’s in General Studies with a Concentration in Early Childhood Education from the University of Kansas, a Master’s in Education as a Teacher of Students with Visual Impairments, (TVI) from UMass Boston, and a Graduate Certificate in Cortical/Cerebral Visual Impairment (CVI) also achieved at UMass Boston. Lacey’s interest was inspired by her 11-year-old daughter’s diagnosis of CVI and she continually strives to learn more and support families with all she has learned along her own journey.

In addition to being Mom of three amazing children and advocate, Dr. Karalyn McGrorty Derstine is a professor of Education and American Studies in Suburban Philadelphia. Her teaching focuses on teaching and learning, inequity, and justice in Education and Public Health. In addition to teaching Education Inequity she has used her expertise to create a course in Health and US Diversity. The course, taught at Thomas Jefferson University, explores significant historical and contemporary issues as they relate to disparity and issues of social justice in public health and medicine in the United States. In her advocacy work Dr. Derstine works with local district, state and federal legislators to advocate for improvements to early intervention, increased funding and the removal of barriers to access and care for disabled individuals in her community, state and country.

Tammy Reisman brings a strong background in education of students with vision impairments, as well as highly developed writing and teaching skills, to her role as the Teacher of Students with Vision Impairments (TVI) program coordinator in the Vision Studies program at the School for Global Inclusion and Social Development. Her responsibilities include student advising, Department of Elementary and Secondary Education (DESE) licensure coordination, and serving as a liaison between SGISD Vision Studies and the College of Education and Human Development licensing office at UMass Boston.

Reisman also networks to secure practicum sites, supervises practicum students in their placements, supports state liaisons throughout New England, and teaches three courses in the Vision Studies program. In addition, she helps to coordinate the DESE summer institutes. When not coordinating the TVI teacher preparation program, Reisman works as a teacher of students with visual impairments in the Newton Public Schools. She works with students in preschool through post-secondary, and has formed a partnership between the Newton Public Schools and UMass Boston’s Vision Studies program that provides practicum experiences for students.

Ellen has over 45 years of expertise in the field of visual impairments, multiple disabilities, deafblindness, CVI, early intervention and transition. She works in the Perkins CVI Center as the Director of Research and Development. CVI is the leading cause of childhood visual impairment in the U.S. Ellen received her Master of Education degree from Boston College in the program for children with deafblindness and multiple disabilities. She has worked in residential programs, educational collaboratives, early intervention programs and public school classrooms.

Ellen teaches Cortical/Cerebral Visual Impairment: Assessment and Education, a mandatory class for training Teachers of the Visually Impaired (TVIs), Orientation and Mobility (O&M) specialists and Vision Rehabilitation Specialists in the Vision Studies graduate programs at the University of Massachusetts, Boston. She co-created the first graduate, five class, CVI Certificate Program at UMASS Boston. In 2008, Ellen was named National Teacher of the Year for Children with Multiple Disabilities by the Council of Schools for the Blind (COSB).

She has presented at multiple conferences, including the New England Association for the Education and Rehabilitation of the Blind and Visually Impaired (AER), International AER, Massachusetts Early Intervention Consortium and Rett Syndrome Family Education Day. She has been invited to share her CVI expertise with faculty at Boston Children’s Hospital. Ellen was co-author of a peer-reviewed article in the journal, Seminars in Pediatric Neurology, entitled “A Questionnaire Assessing What Teachers of Students with Visual Impairment Know About Cortical/Cerebral Visual Impairment.” Her experience assessing and teaching students with CVI was featured in a National Eye Institute article, which discusses NEI-supported research on new diagnostic and teaching strategies for rehabilitation of brain-based visual impairment.

Sylvia Mangan is a CVI Coordinator and speech-language pathologist (SLP) who works at Perkins School for the Blind. She attended graduate school at Northwestern University, and worked in public schools, with a special interest in supporting students with Complex Communication Needs (CCN) and Alternative-Augmentative Communication (AAC). She joined the Perkins Lower School, which sparked a passion for supporting students and families with CCN and Cortical/Cerebral Visual Impairment, which constituted the majority of her caseload. After completing the CVI Certificate through the University of Massachusetts, Boston, Sylvia joined the CVI Center as a CVI Center Coordinator. She is enrolled in the TVI program at the University of Massachusetts, Boston.

Molly has practiced as a pediatric occupational therapist for nine years, spending time in settings such as early intervention, a pediatric outpatient clinic, and adaptive equine assisted therapy with children aged 0-3 before moving on to take a position at Perkins School for the Blind in 2018. She has worked in the Lower School at Perkins for the past six years, serving a population with diverse medical diagnoses and visual impairments, aged 7-15. She is currently the Supervising Practitioner for Related Services in the Lower School, providing mentorship and supervision to colleagues, as well as maintaining direct services to students. Molly is enthusiastic about working with multi-sensory learners, and has experience working with students with various presentations of CVI characteristics.

Rachel Bennett is a Director at the CVI Center at Perkins, where she leads CVINow.org and parent advocacy and support. As a parent to Henry, who has CVI and other disabilities, she knows the duality that comes with being a disability parent—feeling overwhelming love and, at the same time, grief and pain. In 2020, Rachel completed UMass Boston’s CVI Certificate program. Before joining Perkins, Rachel was a middle school special educator and secondary instructional specialist in Maryland.

Nai is an Assistive Technology Trainer, Braille Instructor, American Sign Language (ASL) Interpreter, and specializes in working with DeafBlind individuals of all ages. Nai holds a BA in ASL Interpretation from Gallaudet University. Nai is an adult with CVI and offers private consulting to adults with CVI, children with CVI and their families, and blindness professionals interested in better understanding their CVI clients. In their free time, Nai enjoys writing music and going for walks in nature.

Dr Nicola McDowell is the founder and creator of the Austin Assessment, a screening app for cerebral visual impairment, and a Senior Lecturer in the Institute of Education, Massey University, New Zealand. Her research interests include understanding and supporting children and young people who have cerebral visual impairment, empowerment of children and their parents/caregivers and equity in education. Nicola also regularly shares both her research and personal experience of cerebral visual impairment through presentations and blogs, with a focus on improving outcomes for others with the condition.

Dagbjört Andrésdóttir is a 32 year old international CVI advocate and a classical singer. She was born prematurely with CVI (including other issues), but wasn’t diagnosed with CVI until at age 26. She graduated with a master’s degree in Classical singing from Sigurður Demetz’ academy of singing in May 2023. As well as singing professionally, Dagbjört concentrates on advocating for others with CVI, to try to eliminate disbelief for all CVIers. Her blog, dagbjortandresd.vixsite.com, is read globally with promising reviews.

Tina Zhu Xi Caruso is an international transracial adoptee from China. She was adopted at 11 months and grew up in the Boston Area. By age six, she was diagnosed with Nystagmus as well as Dyslexia, ADHD, and other learning disabilities. She received special education services at school but struggled with not being able to see. Her doctors and teachers recognized she had tracking challenges and but didn’t understand the extent of her vision issues. She was diagnosed with CVI at age 19. Tina is currently a student at Massachusetts College of Art and Design, majoring in photography. Tina is a visually impaired photographer who sees the world differently.

She is passionate about spreading awareness about CVI by capturing how she sees the world with a camera. Tina would love to share what she sees with others because CVI is a spectrum. Most recently Tina has been enjoying being part of the Boston chapter of Achilles International, the only fully inclusive running group in the world for people living with disabilities to socialize by running, walking or rolling together. Through Achilles she also gets to take photos at marathons and Achilles’ events. Recently, Tina was pleased to be included in the children’s book What I Can Be is Up to Me by Kirsten Smedley and illustrated by Kim Crothers. Thanks to CVI Awareness and activism from a teacher of the visual impaired named Diana Garcia-Mejia The book features young people with all kinds of blindness, low vision and CVI to empower readers to see that everyone has unique abilities.

Amanda Griffith-Atkins is a licensed marriage and family therapist and founder of The Amanda Atkins Counseling Group in Chicago. She is also the mother of a 14-year-old son with a rare genetic syndrome. She lives in Chicago with her husband and three sons and specializes in disability parenting, grief and loss, and couples therapy. As a frequent lecturer at Northwestern University, Feinberg Medical School, and Adler University, she’s passionate about education and training and values supervising and mentoring new therapists.

Amanda’s passion is helping give voice to the hard parts of disability parenting, which ultimately helps us become better individuals and parents. Parenting is hard, but connecting to people who get it makes it a lot less isolating. Amanda has been featured in publications such as the Chicago Tribune, Crain’s Chicago, Chicago Parent, and POPSUGAR. She’s also a frequent guest on the Rare Life Podcast and many others. Amanda is writing a book about disability parenting that will be published by Workman Publishing in late 2024.

Dr. Melinda Chang grew up in southern California and attended USC for undergraduate studies, double-majoring in Neuroscience and Kinesiology. She then completed medical school at Washington University in St. Louis. Subsequently, she returned to southern California and completed ophthalmology residency, pediatric ophthalmology fellowship, and neuro-ophthalmology fellowship at the Stein and Doheny Eye Institutes at UCLA. Currently, she practices pediatric neuro-ophthalmology and performs strabismus surgery at Children’s Hospital Los Angeles. Her research focuses on methods to assess visual function in children with cortical/cerebral impairment (CVI) and the application of artificial intelligence to pediatric neuro-ophthalmologic conditions.

Lotfi Merabet is a clinician-scientist investigating how the brain adapts to visual impairment. He completed his doctorate degree in neuroscience (University of Montréal) and clinical doctorate in optometry (New England College of Optometry). He then continued his post-doctoral training at Harvard Medical School, Boston University, and the MGH Martinos Center for Biomedical Imaging. This was followed by a Master’s degree in Public Health (Harvard). In 2010, he joined the clinical and research faculty of the Massachusetts Eye and Ear and his work is currently supported by the NIH/National Eye Institute. He also serves on the Education and CVI Steering Committees of the Perkins School for the Blind, and is a member of the Board of Trustees for the Carroll Center for the Blind and the National Braille Press.

Glen’s research program aims to treat visual impairment through cell-based therapies, pharmacological interventions, or by stimulating adaptive neural plasticity with visual experience. An important component of this work has involved quantifying visual behavior in animal models in a simple and efficient way. To this end, his lab has developed a virtual methodology (OptoMotry) to measure spatial visuomotor behavior in freely moving rodents, using a retinal-stabilizing reflex.

This task, which does not require trial-based learning or intentional responses, has been widely adopted in the vision science community, and is now a standard methodology. His lab has also pioneered the approach of using repeated measures of this reflexive behavior as a therapeutic experience to enhance cortical visual function. Recently, the lab has translated these procedures for use in humans with brain injury, to assess visual function and to stimulate recovery of function. Indeed, quantifying visual behavioral thresholds in brain damaged humans who cannot follow commands has not been possible; however with their development of software to move standardized visual stimuli on a computer screen and record following smooth eye movements with an integrated eye-tracking device, it is now possible to do so. In addition, adaptively structuring these experiences, as they have in their animal models, also shows promise as visual therapy.

Jeremy Wolfe, PhD, is Professor of Ophthalmology and Professor of Radiology at Harvard Medical School and Director of the Visual Attention Lab at Brigham and Women’s Hospital in the Department of Surgery. Wolfe received an AB in Psychology in 1977 from Princeton and his PhD in Psychology in 1981 from MIT. His research focuses on visual search and visual attention with a particular interest in socially important search tasks in areas such as medical image perception (e.g. cancer screening), security (e.g. baggage screening), and intelligence. This research has been funded since 1982 by NIH (NEI, NIMH, NCI), NSF, AFOSR (Air Force), ONR (Navy), ARO (Army), Homeland Security, and the Nat. Geospatial Agency as well as by IBM, Google, Toshiba, Hewlett-Packard, & GE.

Wolfe taught Introductory Psychology and other courses for 25 years, mostly at MIT. He has served as Past President or Chair of the Federation of Associations in Behavioral and Brain Sciences (FABBS), the Psychonomic Soc, APA Division 3, Eastern Psychological Assoc, NAS Panel on Soldier Systems. He has served on the Governing Boards of the Vision Sciences Society, APA Div 1 and 6. Wolfe was Founding Editor-in-Chief of Cognitive Research: Principles and Implications (CRPI), the newest Psychonomic Society journal, and Past-Editor of Attention, Perception, and Psychophysics. Wolfe also serves on the Board of the North American Board of the Union for Reform Judaism. He was elected to American Academy of Arts and Sciences in 2019.

Dr. Gordon is associate director for science policy and legislation at the National Eye Institute (NEI), where he directs the Office of Program Planning and Analysis. He coordinates NEI reporting, planning, and portfolio analysis activities, and serves as the legislative liaison. He led the development of the NEI Strategic Plan: Vision for the Future 2021-2025 and is currently leading implementation efforts across the seven Areas of Emphasis defined by the plan. He earned a BA in biochemistry at Rice University followed by a PhD in neuroscience at UC Berkeley. As a Presidential Management Fellow, he spent two years at the National Institutes of Health evaluating a collaborative research program on type 1 diabetes. He was also a fellow on the House Ways and Means Health Subcommittee, working on mental health and end-stage renal disease.

Dr. Hardy is a program director in the Division of Clinical Research at the National Institute of Neurological Disorders and Stroke (NINDS). Prior to joining NINDS in 2022, she was a pediatric neuropsychologist at Children's National Hospital and a tenured professor in the Departments of Psychiatry and Behavioral Sciences and Pediatrics at the George Washington University School of Medicine. Dr. Hardy has expertise in developmental and acquired difficulties with attention, learning, and executive functioning, particularly in relation to disease or disorders of the central nervous system in childhood. Her clinical research program was focused primarily on identifying factors associated with neurocognitive difficulties in survivors of pediatric cancer and children with neurofibromatosis, including those with visual impairment related to tumors of the optic pathway. In addition, Dr. Hardy has participated in research with neurodevelopmental populations including ADHD and autism spectrum disorder. Dr. Hardy has a particular interest in the development and evaluation of interventions to treat or prevent cognitive difficulties and decline in the context of neurodevelopmental or neurologic disorders.

Ms. Nelson is a program manager for eyeGENE® within the National Eye Institute's (NEI’s) Office of Data Science and Health Informatics. eyeGENE® is a genomics medicine initiative by NEI that includes a participant registry, a DNA biorepository, and genotype and phenotype data. Ms. Nelson has a BS in genetics and genomics from the University of Wisconsin-Madison and previous ophthalmology clinical research experience from the Medical College of Wisconsin Eye Institute. She will be overseeing data collection and data management of the CVI Registry following the workshop.

Dr. Legge has been interested in an improved understanding of children with CVI since beginning practice in 1991. This interest led to the formulation of the American Conference on Pediatric Cortical Visual Impairment, which has conveened 9 times since 2012. He has served as the Program Director for each of these meeting. He completed a Residency in Ophthalmology at Boston University Medical Center, and a Neuro-ophthalmology Fellowship at Tufts – New England Medical Center. Dr. Legge practices pediatric and adult neuro-ophthalmology, and strabismus surgery at the Truhlsen Eye Institute. He serves as Assistant Professor in the Department of Ophthalmology and Visual Sciences. His new interests include wellness and recreational reading.