Events

Pathway to Diagnosis: Genetic Testing for Inherited Retinal Diseases

Join the National Center for Children’s Vision and Eye Health for
Pathway to Diagnosis: Genetic Testing for Inherited Retinal Diseases
May 29, 2:00 pm – 3:30 pm ET.

In this 90-minute webinar, you will gain a deeper understanding of genetic testing as it contributes to diagnosis for an IRD. Topics include when and how children may receive genetic testing; benefits of receiving results for diagnosis, registries, clinical trials, and treatments; strategies for providing information and support to families and children; and patient testimonials about their IRD journeys.

This webinar is tailored for families of children with inherited retinal diseases and visual impairment, patient support organizations, school nurses, early childhood program staff including Head Start, Early Intervention and special education professionals, teachers of students with visual impairments, and healthcare providers.

Certificates of attendance will be available.

Join Us!

Moderator

DAWN K. DECARLO, OD, PHD CEO, Sight Savers America
Dawn K. DeCarlo, OD, PhD
CEO, Sight Savers America

Dr. DeCarlo received her Doctor of Optometry and Master of Science degrees from the University of Alabama at Birmingham (UAB) School of Optometry and completed residency training in vision rehabilitation and hospital-based optometry at the Chicago West Side VA Medical Center and the Hines Central Blind Rehabilitation Center and earned her Master of Science in Public Health and her PhD in Vision Science from UAB.  She served as faculty at the UAB School of Optometry as well as serving as Director of the UAB Center for Low Vision Rehabilitation.

Dr. DeCarlo joined Sight Savers America (SSA) as CEO in October 2023. Dr. DeCarlo played an important role in helping SSA develop its Low Vision and Blindness Program into a national model. She is a Diplomate of the Low Vision Section of the American Academy of Optometry and served as Section Chair from 2016-2018. Dr. DeCarlo is a Silver Fellow of the Association for Research in Vision and Ophthalmology.  Her research has been funded by the National Institutes of Health/National Eye Institute and the National Institute for Disability, Independent Living and Rehabilitation Research and focused on reading and vision impairment.

Sponsor

DONNA HUNT HODGE Director of Marketing and Sales, Retina and Gene Therapies, Johnson & Johnson Innovative Medicine
Donna Hunt Hodge, MBA
Director of Marketing and Sales, Retina and Gene Therapies, Johnson & Johnson Innovative Medicine

Donna is a pharmaceutical and healthcare commercial leader with 20 years of delivering growth and productivity. She is a commercial strategist, innovator, and DEI advocate.

She is an award-winning executive, driving the commercialization of treatments in oncology, neurology, primary care, diabetes, hematology, HIV, retina disease and gene therapy. Donna is dedicated to redefining life for rare disease patients and has a passion for advancing gene therapies.

Presenters

Natario Couser, MD, Associate Professor of Ophthalmology, Pediatrics, and Human & Molecular Genetics in Richmond, VA
Natario Couser, MD
Associate Professor of Ophthalmology, Pediatrics, and Human & Molecular Genetics in Richmond, VA

Dr. Natario Couser completed his medical education and internship in Internal Medicine at the Virginia Commonwealth University (VCU) School of Medicine. He completed his ophthalmology residency at Howard University, serving as co-chief resident in his final year. He received fellowship training in pediatric ophthalmology and adult strabismus at Emory University, completed a Master of Science degree in biotechnology from Johns Hopkins University and training in clinical genetics at the University of North Carolina at Chapel Hill. Dr. Couser is one of only a few individuals currently board certified by both the American Board of Ophthalmology and the American Board of Medical Genetics and Genomics. He was the founding director for the first dedicated specialty service in the state of Virginia focused on managing patients with ophthalmic genetic disorders.

He has been the principal investigator on 10 clinical trial/IRB research studies and a co-investigator on others. He has participated with 10 national committees/advisory panels including currently serving as the Vice-Chair of the American Association for Pediatric Ophthalmology and Strabismus Genetics Eye Disorder Committee, and a member on the Basic and Clinical Science Course Committee for the American Academy of Ophthalmology, and for the Patient-Centered Outcomes Research Institute Advisory Panel on Rare Disease. He is also the Deputy Editor-in-Chief for Genetics in Medicine Open, an official journal of the ACMG, and an Associate Editor for Ophthalmic Genetics, an official journal of the International Society for Genetic Eye Diseases and Retinoblastoma (ISGEDR).

Haley Agers
Prevent Blindness ASPECT Patient Engagement Program Participant

 

Hayley was diagnosed with Retinitis Pigmentosa at age five, after she had difficulty coloring in the lines, bumped into things that were seemingly not a problem for any other child, and was unable to see what the teacher was writing on the board. She moved from England to Washington State at age 19, where she found specific organizations and agencies that provided her with training in order to help her adapt to vision loss and prepare her for the future. She had some genetic testing at age 20. She is currently enrolled in the Prevent Blindness ASPECT Patient Engagement Program, where she is learning to tell her story more effectively

RACHELLE LIN, OD, MS, FAAO Associate Professor Southern California College of Optometry at Marshall B. Ketchum University
Rachelle Lin, OD, MS, FAAO
Associate Professor, Southern California College of Optometry at Marshall B. Ketchum University
 

Dr. Lin is an Associate Professor at the Southern California College of Optometry at Marshall B. Ketchum University, where she teaches low vision rehabilitation and genetics. She treats patients in the clinical departments of Acquired Brain Injury and Low Vision Rehabilitation, where she also conducts genetic testing for inherited eye conditions.

Dr. Lin is a Trustee of the California Optometric Association (COA) and active committee member of the American Optometric Association. She served as Chair of the COA Low Vision Rehabilitation Section and as President of the Orange County Optometric Society. She is also a Fellow of the American Academy of Optometry. Dr. Lin received her Doctor of Optometry and Master of Science in Vision Science degrees from SCCO and completed her residency at VA Long Beach.

JOY THOMAS Prevent Blindness ASPECT Patient Engagement Program Graduate
Joy Thomas
Prevent Blindness ASPECT Patient Engagement Program Graduate

Joy Thomas is a credentialed, masters-level teacher and has worked in the field of education for over 20 years. She has specialized training in the areas of academic and mental health interventions, 504 accommodations, and advocacy. Joy draws from experience as both an educator and a student with a disability.

Joy co-author doublevisionblog.com with her twin sister, documenting life with an inherited retinal condition. She is a graduate of the Prevent Blindness ASPECT Patient Education Program.

BEN SHABERMAN Vice President, Science Communications Foundation Fighting Blindness
Ben Shaberman, MS, MA
Vice President, Science Communications, Foundation Fighting Blindness

Ben has been communicating retinal disease science and research for the Foundation Fighting Blindness (FFB) for nearly 20 years. He presents the latest news on emerging therapies at local and national events for patients and families and conducts a variety of science education activities for staff and constituents. Ben hosts the Eye on the Cure podcast series which is available on most major podcast platforms. In addition, he reports on the latest research advancements for the Foundation’s electronic and print publications.

Ben also enjoys working with constituents one-on-one to help them understand their retinal disease and the research underway that may benefit them. He earned a Master of Arts degree in writing from Johns Hopkins University, a Master of Science in Systems Management from the University of Maryland, and a Bachelor of Science in Computer Information Science from Cleveland State University.

Watch Our 2023 Webinar on Inherited Retinal Diseases

Learn more about Inherited Retinal Diseases.

This webinar is made possible with funding from Johnson & Johnson Innovative Medicine.

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