MAY 2024

Wednesday, May 29, 2024, 2 p.m. ET

The National Center for Children’s Vision and Eye Health at Prevent Blindness will be hosting the free webinar, "Pathway to Diagnosis: Genetic Testing for Inherited Retinal Diseases." This webinar is specifically 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. This webinar is supported by funding from Johnson & Johnson.

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. 

Basim Althani served as an intern with the NCCVEH this academic year while completing his Master of Public Health degree from Northwestern University. 

I am Basim Althani, a 27-year-old who has been defying Stargardt Disease since the age of 23 years, though the battle commenced long before, when I was but a 4-year-old boy barely able to discern the faces of those around me. Despite the early signs, the journey from dim vision to academic titan was fraught with ignorance, neglect, and outright dismissal. Elementary school unveiled the harsh reality of my condition, prompting my parents to negotiate a front-row seat to education while inadvertently casting me into the arena of ridicule. "Four eyes," they jeered, oblivious to the fact that their taunts only fueled my ascent to academic prominence.

IRDs are caused by a change in one or more genes and cannot be prevented. These mutations change the structure and function of the retina and cause impaired vision, and in some cases, complete vision loss. Additionally, IRDs can affect individuals of all ages, can progress at different rates, and are rare. Genetic testing is available to identify many gene variants that cause IRDs.

Nominations are now being accepted for the 2024 Bonnie Strickland Champion for Children’s Vision Award. Nominations for individuals and groups are due July 1, 2023. The Award recognizes significant efforts by an individual or group of individuals to improve public health approaches for children’s vision and eye health at the state or national level that are replicable and create sustainable change. The award was established by the National Center for Children’s Vision and Eye Health at Prevent Blindness to commemorate Bonnie Strickland and her groundbreaking work to establish a comprehensive system for children’s vision in the United States. Strickland served as Director of the Division of Services for Children with Special Health Needs, Maternal and Child Health Bureau prior to her retirement in 2014.

Nominees for the Award may include individuals, or a group comprised of diverse stakeholders who are implementing innovative changes to improve children’s vision in the United States. Nominees should demonstrate an impact in one or more areas of a public health system supporting children’s vision including:

• Key Stakeholder Engagement or Collaboration, including representation from families and diverse populations.
• Training and Education
• Public Awareness
• Provision of Resources and/or Services
• Surveillance and Accountability
• Reduction of Health Inequities
• Vision and Eye Health Infrastructure Development- Local, State, or National Level
• Making the connection between vision and overall health, early childhood development, and learning

Nominate yourself or a colleague.

The Prevent Blindness Children's Vision Screening Certification Course has helped to ensure evidence-based screening for 350,182 children. As of 5/2/24, the course certified 125 learners, impacting 104,163 children. Hundreds more are in the process of completing the course. Why is it important to join this movement?

Unless vision screeners are trained and certified in a standardized program that promotes evidence-based protocols, children and students may participate in vision screening with different tools and procedures depending on where they reside or which programs and schools they attend. This varied approach leads to potential under-referrals and inconsistencies that can drive inequalities in children’s vision, eye care, and eye health in the United States.

To help ensure a consistent and standardized approach, the Prevent Blindness Children's Vision Screening Certification Course provides training and national certification in evidence-based children's vision screening protocols and techniques. The Course also highlights ways to help decrease the gap between vision screening referrals and confirmatory eye examinations. In addition to online modules, the Course provides individualized virtual skills mentoring sessions using the teach-back methodology to ensure screeners use tools correctly and are comfortable with how they screen vision and follow up with families. This national certification is valid for 3 years. You will also receive 5 contact hours for professional development.

P. Kay Nottingham Chaplin, EdD, has conducted virtual presentations on various vision screening and family follow-up topics at state school nurse conferences. Depending on her calendar, she may be available to speak at your next Head Start, school nurse, or public health department local or state meeting or conference. Dr. Nottingham Chaplin tailors her presentations to meet topic requests. To schedule Dr. Nottingham Chaplin, email her at nottingham@preventblindness.com.

1. Children who spend many hours doing close visual work, such as using electronic devices (computers, tablets, and cell phones) have a higher risk of developing myopia (nearsightedness)?
2. Children who spend time outside with exposure to sunlight may have a lower risk of myopia becoming worse? 

Summer is a great time for children to play outside. Download our myopia fact sheet.

Kira Baldonado, Vice President of Public Health and Policy at Prevent Blindness discusses myopia with Lauren C. Ditta, MD, Pediatric Neuro-Ophthalmologist at Le Bonheur Children's Hospital and Associate Professor of Ophthalmology and Pediatrics at Hamilton Eye Institute, University of Tennessee Health Science Center.

Exposure to UV rays can damage your eyes. The most immediate danger to children is photokeratitis, a painful type of corneal sunburn linked with the bright sunlight reflected off beaches and ski slopes. Long-term exposure can lead to cataracts (cloudiness of the lens), skin cancer around the eyelids, and even macular degeneration. Prevent Blindness recommends that everyone, including children, protect their eyes from the sun’s harmful rays. Sunglasses with UV protection can help boost the eyes’ ability to filter out damaging rays.

Download the Selecting Sunglasses for Children fact sheet.

Prevent Blindness launched an educational initiative on Retinopathy of Prematurity (ROP) in February. Share our short videos on ROP with families focused on what is ROP, how the ROP team supports families, and how families experience ROP and support each other. Check out our 3 fact sheets in English and Spanish:

The Jack McGovern Coats’ Disease Foundation raises awareness of Coats’ Disease, a rare retinal disease where the retinal capillaries break open and leak the serum portion of the blood into the back of the eye. The leakage causes the retina to swell and can cause partial or complete detachment of the retina, vision loss, and even the loss of an eye. Coats’ Disease typically affects one eye.

Coats’ Disease is usually diagnosed in childhood; two-thirds of patients are diagnosed under age 17 years and 75% of patients are male. Because of a lack of disease awareness, even in the medical community, vision can become very poor in the affected eye before an issue is detected and diagnosed. Infants and young children may develop misalignment of their eyes (strabismus) but sometimes there are no obvious symptoms. 

The Jack McGovern Coats’ Disease Foundation advises parents to periodically take a flash photo of their children and look for signs of a “white reflex” from the pupil (leukocoria meaning "white pupil") as opposed to the normal “red reflex” often seen from a camera flash. The white or yellow reflex can be an indicator of Coats’ Disease, or more than 20 different eye disorders and the child should be seen by an ophthalmologist as soon as possible! For more information visit curecoats.org. 

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