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
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!
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.
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.
Eye Conditions and Syndromes
A Shared Vision: Resources for Inherited Retinal Diseases
Spark Therapeutics has launched a new website designed to help patients, caregivers and health care professionals better understand inherited retinal diseases (IRDs) and the importance of genetic testing.
Eye Conditions and Syndromes
New Technology Could Cure Retinitis Pigmentosa (RP)
Gene-editing technology could personalize how we treat eye diseases.
Health & Nutrition
Gene Therapy: What is it and how does it work?
With so much in the news these days about gene therapy, you may be wondering if there really is a treatment on the horizon to benefit inherited eye diseases. The...
Health & Nutrition
Rare Disease Resources
Rare diseases affect over 350 million people in the world and it is estimated that 50% of those affected are children. If your child has been diagnosed with a rare...
Eye Conditions and Syndromes
My child was just diagnosed with a retinal disorder, are there any treatments? Is there a cure?
Blindness due to a retinal disorder is no longer completely untreatable. There are devices that can restore or augment sight as well as some serious movement in the world of...
Eye Conditions and Syndromes
Regenerating Optic Nerves
Everyone knows you can't regenerate nerves, so if the optic nerve is damaged or underdeveloped there really aren't any options. Or are there?