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
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!
Feeding and Eating, Visual Impairment
What can your blind child learn while baking in the kitchen?
The kitchen is the perfect place to teach your visually impaired child important life lessons. Think about all the things you learn just while making cookies!
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!
Research Studies
Study shows brain uses visual cortex while computing math problems
A recent JHU study shows blind people use visual cortex while solving math problems
Eye Conditions and Syndromes, Visual Impairment
ID YOUR IRD Offers Free Genetic Testing for Families with Inherited Retinal Diseases
Spark Therapeutics launches ID YOUR IRD genetic testing info site offering free genetic testing for people with inherited retinal diseases.
Feeding and Eating, Visual Impairment
Making Lunch Time More Fun for Blind Kids
We've rounded up some tips and fun ideas to help you plan ahead to make your child's lunch quick to assemble, plus fun and healthy too!
Eye Conditions and Syndromes
Update on LCA Treatment and Spark Therapeutics
Spark Therapeutics continues to test their treatment for LCA (RPE-65) and they find that it is safe, efficient and provides long term benefits
Eye Conditions and Syndromes, Visual Impairment
Pediatric Cortical Visual Impairment Society (PCVIS)
The mission of the Pediatric Cortical Visual Impairment Society is to advocate for improvement in the quality of life of children with vision loss due to brain disorder, disease or...
Eye Conditions and Syndromes
The Science Behind an Upcoming Treatment for LCA10/LCA-CEP290
A doctor in the Netherlands is developing a treatment for LCA that could help patients with the CEP290 mutation.
Feeding and Eating
Scooper Bowl & Plate with Suction Cup Bases
Ableware sells two assistive dinnerware pieces including the Scooper Bowl with suction cup base to keep it in place and the Scooper Plate, also with a suction cup base.
Eye Conditions and Syndromes
New App Helps Patients Manage Care After Strabismus Surgery
A new pilot app from Boston Children's Hospital allows doctors in their Ophthalmology Department to remotely monitor patients after surgery for strabismus.
Feeding and Eating, Visual Impairment
The Blind Cook is Cooking with Her Four Senses
This video series features blind chef Christine Ha as she demonstrates cooking without sight. The show also offers nutritional tips and other cool food-related information.
Eye Conditions and Syndromes
CEP290 in LCA and other Ciliopathies
Mutations in the CEP290 gene are linked to many different ciliopathies (disease of the cilia), like LCA, Joubert Syndrome, Meckel syndrome, Bardet-Biedl syndrome and more.