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

a baby girl wearing vest with recorder

Research Studies

Language Research for Parents of Blind Infants

The Bergelson Lab at Duke University is looking for families with blind infants to participate in studies about language development.

laughing woman

Eye Conditions and Syndromes, Visual Impairment

Why I laughed when my daughter lost her eye

Gwen tells funny stories about raising her daughter Ivey who has bilateral anophthalmia. Gwen says it's important for us to learn to laugh at ourselves and our lives and teach...

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?

Ivan smiling

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!

little girl with her Tray Haven

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!

zebrafish

Health & Nutrition

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.

child eating with a spoon

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.

boy in his wheelchair

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!

people at a conference

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.

ice cream cone

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.

girl rubbing her eyes

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...

Aly with Lightaide

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!

cookies

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!

Rare Disease International

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."

Our 20 Favorite iPad Apps for Kids with CVI

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!

8 misconceptions about CVI

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!

MRI brain scans showing areas used during math computations for blind and sighted people

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

smiley face sandwich in a lunch box

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!

Molecules

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

Savannah

Eye Conditions and Syndromes

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...

female doctor examining DNA code

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.

blue plate and bowl with rounded side and white suction base

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.