Health & Nutrition
Find advice on how to manage doctor visits and hospital stays, learn how to teach self-feeding skills and discover new medical treatments and research opportunities for children who are blind
Filter by: Eye Conditions and Syndromes, Feeding and Eating, Research Studies
Health & Nutrition
10 Things you feel when you’re considering brain surgery for your child
If you are looking at the possibility of brain surgery for your child with epilepsy, what thoughts and concerns have plagued you?
Eye Conditions and Syndromes, Visual Impairment
Leber’s Congenital Amaurosis (LCA) FAQ
All your questions about Leber's Congenital Amaurosis (LCA) are answered here in one place. Don't see your question? Then just send us an email and we'll get right on it!
Feeding and Eating
Tray Haven Keeps Everything On Your Child’s Tray
Wouldn't it be great if you could just put up a fence around your child's tray so they couldn't lose their cups and toys? Now you can!
Eye Conditions and Syndromes, Visual Impairment
How one tiny fish may help us find a cure for blindness
At the University of Michigan Kellogg Eye Center, they are studying the visual system of the zebrafish in hopes of finding cures for blindness.
Eye Conditions and Syndromes
The search for a treatment for LCA10-CEP290
Laura Steinbusch reports on exciting news from ProQR and their trials for a treatment for blindness caused by LCA10-CEP290.
Feeding and Eating, Visual Impairment
Teaching a Blind Child How to Use a Spoon Independently
Tips, ideas and resources for teaching your blind child how to scoop and use a spoon on their own without using hand over hand techniques.
Research Studies
Assessing Visual Abilities in Children with Cerebral Palsy
Is it important to take vision into account when assessing the needs of children with cerebral palsy? You can help make that happen!
Eye Conditions and Syndromes
How Can I Get My Son To Keep His Glasses On?
A question for our parent community: I need proven techniques used to get a two year old to wear his new glasses. Any suggestions will be greatly appreciated!
Research Studies
Looking for LCA Advocates to Join Spark’s RPE65 Advisory Boards
This series of Advisory Boards hosted by Spark Therapeutics will be with members of the community living with an RPE65 genetic mutation.
Eye Conditions and Syndromes
Saving Vision by Tricking Rods into Thinking They’re Cones?
A different way to think about saving vision in inherited retinal diseases may be to turn rods into cones.
Eye Conditions and Syndromes, Visual Impairment
My child has LCA and presses her eyes. Is this normal? What can we do about it?
If your blind child is pressing or poking their eyes you may be looking for information on why they are doing this and what you can do to help them...
Assistive Technology, Eye Conditions and Syndromes, iPad Apps and Accessibility
The “Big 3 Tool Kit” for Children with CVI: PLUS the 20 Best CVI-Friendly iPad Apps!
Children with CVI often prefer clear, crisp images with little background clutter. They respond well to high contrast, bright colors (especially yellow or red), movement and LIGHTS!
Eye Conditions and Syndromes
Leaving no one ‘LCA patient’ behind: Rare Diseases International policy event
"When you received your, or your child’s, diagnosis you might have felt as if in the desert; alone and no idea which direction is the right one."
Eye Conditions and Syndromes, iPad Apps and Accessibility
Our 20 Favorite iPad Apps for Kids with CVI
The iPad is very interactive and easily tailored to suit the needs of kids with CVI, if you have the right apps. Here are our favorites!
Eye Conditions and Syndromes, Visual Impairment
Top 8 Misconceptions about Cortical Visual Impairment (CVI)
Do you know the facts of Cortical Visual Impairment (CVI)? Here are 8 myths you may have heard that just aren't true!