Tuesday, May 16, 2023, 3:00-4:30 pm ET via Zoom
Inherited retinal diseases—or IRDs—are a group of diseases that can cause severe vision loss or even blindness. Examples of IRDs include Retinitis Pigmentosa, Choroideremia, Stargardt Disease, Leber Congenital Amaurosis, and Cone-rod Dystrophy. Each IRD is caused by at least one gene that is not working as it should. IRDs can affect people of all ages, can progress at different rates, and are rare. However, many have symptoms that get worse over time. This webinar will focus on Children living with an IRD. Topics covered will include causes, diagnosis, genetic testing, treatment, and support for children and families. Learn more at Inherited Retinal Diseases – Prevent Blindness.
Professionals and families will gain knowledge about IRDs, genetic testing and gene therapy, and resources to support families.
- School nurses
- Head Start and other early childhood program staff
- Early Intervention and special education professionals
- Teachers of Students with Visual Impairments
- State vision rehabilitation program staff
- Patient support organization staff
- Primary care providers
- Eye care providers
- Donna Hunt Hodge, MBA, MS, Director of Marketing, Retina Gene Therapies, Janssen Pharmaceutical Companies of Johnson & Johnson
- Arlene Drack, MD. Professor of Ophthalmology and Visual Sciences, Departments of Pediatrics and Ophthalmology and Visual Sciences, University of Iowa
- Sherry Day, OD, FAAO. Clinical Assistant Professor, Ophthalmology and Visual Sciences Section Leader, Vision Care, Contact Lens and Low Vision Rehabilitation, University of Michigan
- Kari Branham, MS, CGC. Assistant Professor, Ophthalmology and Visual Sciences and Genetic Counselor, Inherited Retinal Dystrophy Clinic, University of Michigan
- Mariagrazia Buttitta, MA, NCC, Patient with Cone Dystrophy, and national Certified Counselor, author, motivational speaker, career coach, wellness and health enthusiast, and a passionate mental health and disability advocate
- Allison Galloway, FNP-C, MS, SA, Parent of two children with LCA13, a childhood degenerative retinal disease and certified Family Nurse Practitioner, master’s prepared in Food and Science, and a certified Surgery Assistant
Kari Branham, MS, CGC is a Clinical Associate Professor and Director of Ophthalmic Genetic Counseling at the University of Michigan’s Kellogg Eye Center. She received her Master’s Degree in Genetic Counseling from the University of Michigan and has been providing genetic counseling services to patients affected with inherited retinal degenerations for over 20 years. She also serves as the patient coordinator for those receiving the Luxturna gene therapy treatment at the Kellogg Eye Center. She is involved in multiple different clinical treatment trials and her own research focuses on understanding more about the genetic basis for disease in patients affected with inherited retinal degenerations.
Mariagrazia Buttitta, MA, NCC is a National Certified Counselor (NCC), author, motivational speaker, career coach, wellness and health enthusiast, and a passionate mental health and disability advocate. Mariagrazia holds a Master’s Degree of Arts in Clinical Mental Health Counseling from The College of New Jersey. Mariagrazia is the author of Now I SEE: How I Battled Blindness, Mental Illness, an Espresso Habit and Lived to Tell the Tale. Mariagrazia is a tireless advocate who regularly educates and speaks to college students and organizations about her blindness and her long-term battle with depression and anxiety. She aims to address and end the stigma that surrounds both mental and physical disabilities through speaking engagements, writing, and advocacy work. Her website, the cornerstone of her advocacy efforts, is also designed to help people who face the often-crushing burdens of disability and stigma to face adversity, connect with professionals, and embrace their differences. www.embracingyourdifferences.com
Sherry Day, OD, FAAO is Clinical Assistant Professor, Ophthalmology and Visual Sciences Section Leader, Vision Care, Contact Lens and Low Vision Rehabilitation, University of Michigan. Since completing her Low Vision Rehabilitation residency at UC Berkeley 25 years ago, Dr. Day has engaged in clinical research and been practicing low vision and specialty contact lenses at the University of Michigan and is currently Assistant Professor. Her passion is educating the next generation of eye doctors to provide care for patients with vision impairment of all ages. She directs the Specialty Contact Lens and Low Vision Course for International Ophthalmology and has trained doctors from 9 countries in the past decade, including Kenya, Egypt, and Philippines. To effect clinical care guidelines and policies at the state and national levels, she is a co-chair of the Vision Rehabilitation committee of the Michigan Optometric Association and board member of the Vision Rehabilitation Committee of the American Optometric Association. This year, she also began her position as a Board member of the American Academy of Optometry Foundation. Dr. Day is also the inaugural section chief of the Kellogg Eye Center’s Vision Rehabilitation Service which brings together a seamless collaboration of researchers and clinicians to deliver holistic care for patients with vision impairment.
Arlene Drack, MD. Ronald Keech Professor of Pediatric Genetic Eye Disease Research, Director, Electrophysiology Institute for Vision Research, Department of Ophthalmology and Visual Sciences, University of Iowa, is a clinician-scientist specializing in pediatric ophthalmology, with a subspecialty in genetic eye diseases. She directs the Electrophysiology service in the Department of Ophthalmology and Visual Sciences. For 15 years Dr. Drack did primarily clinical research and medical/surgical patient care, and served as Chair of Pediatric Ophthalmology at The Children’s Hospital, Denver, and directed Pediatric Ophthalmology Postdoctoral Fellowship programs. In 2008 she moved to the University of Iowa to start a pediatric genetic eye disease service and to served a co-investigator in the Phase III human gene therapy trial for RPE65-associated Leber congenital amaurosis. This trial, which resulted in the first FDA approved ocular gene therapy, is proof of concept that “untreatable” causes of childhood blindness are treatable and formed the basis for her work in studying mechanisms and developing treatments in animal models and participating in human clinical treatment trials. Dr. Drack’s clinical practice is now limited to pediatric genetic eye disorders, especially inherited retinal degenerations.
Allison Galloway, FNP-C, MS, SA, is the proud mother of two children with the rare diagnosis of LCA13, which is a childhood degenerative retinal disease. Allison and her family live in Westminster, CO where they enjoy hiking, skiing and anything outdoors. She is a certified Family Nurse Practitioner, master’s prepared in Food and Science, and a certified Surgery Assistant. She has worked in Bariatric surgery for the past 17 years and also owns her own practice in Boulder, CO where she specializes in hormones and functional health. She is a board member of the RDH12 Fund for Sight, which brings awareness to and raises money for research for her children’s disease. She has done many speaking engagements about inherited retinal diseases and leads a yearly fundraiser called the Eye Love Logan and Zoe 5k to raise money for research for the RDH12 Fund for Sight.
Donna Hunt Hodge, MBA, Director of Marketing, Retina Gene Therapies, Janssen Pharmaceutical Companies of Johnson & Johnson leads the Retina Gene Therapies business in the US – a team with the mission to bring Johnson and Johnson’s first gene therapy to market to help people living with an ultra-rare disease known as X-Linked Retinitis Pigmentosa, which is an inherited retinal disease that causes progressive blindness. Donna has built an entrepreneurial-minded team and fostered a start-up mentality, which is what it will take to blaze a new path for our organization in gene therapy and in the gene therapy space overall for this unique patient population. Prior to leading our US Retina team, Donna worked in CVM where she was tapped to launch the type 2 diabetes medication Invokana. Her career began at J&J with an internship in her home state of NJ before she ventured out to climb the marketing ladder at Sanofi and then Novo Nordisk before returning to J&J. Donna received her bachelor’s degree from Florida A&M University, her MBA from the University of Maryland and recently obtained a new certification: Black Executive Leadership Program from McKinsey & Company.
This webinar has been made available through the generosity of: