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

the blind cook

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.

diagram of gene therapy in the retina

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.

CRISPR/cas9 gene diagram

Eye Conditions and Syndromes

New Technology Could Cure Retinitis Pigmentosa (RP)

Gene-editing technology could personalize how we treat eye diseases.

scientist in the lab

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...

Rare Disease Resources

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...

retinal implant

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...

Regenerating Optic Nerves

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?

genetic codes in colorful test tubes

Eye Conditions and Syndromes

Genetic Testing for Retinal Diseases: Your Questions Answered!

Do you have questions about the genetics behind an inherited retinal disorder? How do you do genetic testing... and what do you do with the test results?

Z-Vibe Spoon

Feeding and Eating

Z-Vibe Spoon

The Z-Vibe is a vibrating sensory tool often used in oral-motor stimulation to help kids learn to use their mouths for chewing and eating. The basic Z-Vibe comes with a...

Diagram showing how Microbes can cause vison loss

Eye Conditions and Syndromes

Gut Microbes Linked to Blinding Autoimmune Disease

New research shows the autoimmune eye disease could be linked to gut microbes.

diagram of brain

Eye Conditions and Syndromes

Study Shows Blind Children Use Visual Cortex

Research study shows blind children use the visual cortex area of the brain to process language.

Retinal pigment epithelium

Eye Conditions and Syndromes

A Huge Leap Forward for LCA Gene Therapy

Spark Therapeutics announces the success of their phase 3 clinical trials for LCA gene therapy and their plan to seek FDA approval in 2016.

retina scan

Eye Conditions and Syndromes

Optogenetics: A New Way to Restore Sight

Optogenetics looks at restoring sight to patients with retinal damage in a whole new way by focusing on transforming the function of ganglion cells.

Brain Plasticity

Health & Nutrition

Brain Plasticity News in Gene Therapy

Researchers prove that "retina-brain pathways can be established in LCA patients," even after decades of near blindness and these pathways are strengthened with use after the retina has been treated.

Shelby in her WonderBaby T-Shirt

Eye Conditions and Syndromes, Special Needs

Why I Loved Attending the CHARGE Conference

I was nervous about attending my first CHARGE conference, but I am so happy that I did! It was wonderful! You should attend a family conference about your child's diagnosis...

Ivan using an EazyHold with a mixing spoon

Feeding and Eating, Fine and Gross Motor, Product Reviews

EazyHold: Grip Assist Strap

EazyHold is a simple grip assist strap that easily attaches to objects enabling kids with limited grip strength to accomplish daily living skills.


Health & Nutrition

Gene Therapy Experts Meet to Exchange Knowledge

Top researchers reported positive findings on clinic trials of gene therapy for people with LCA, Usher Syndrome, Stargardt disease, among many others.

eye detail with ONH

Health & Nutrition

Investigating the Missing Link in Nerve Regeneration

The ability to make a human nerve regenerate successfully (as with the ability to communicate effectively with the brain) could help cure a number of diseases and injuries, including visual...

futuristic eye

Eye Conditions and Syndromes, Research Studies

Discovering New Technology for Children and Adults with Severe Retinal Blinding Diseases

Harvard is seeking information about people with severe early onset retinal disease. This information will inform the design of a new technology that has the potential to help people with...

G-Tube Belt

Feeding and Eating

Made with Love 213: G-Tube Belts, Feeding Pump Packets & More

Handmade Clothing, Feeding Tube Accessories, Clothing Accessories, Hair accessories, and Baby gear.


Eye Conditions and Syndromes

Genetic Mutation May Cause Some forms of Anophthalmia/ Microphthalmia

Researchers have found a genetic mutation that explains why some children are born without eyes (anophthalmia) or with small eyes (microphthalmia).

Visual Code for treating Blindness

Eye Conditions and Syndromes

The Visual Code That May Treat Blindness

New treatment allows visual information to bypass damaged retina cells and successfully reach the brain where it can be processed.

baby eating

Feeding and Eating

10 Things You Should Know about Feeding Therapy

Frienship Circle's article on feeding therapy includes where to find help, assessment and therapy, as well as the family dynamics of it all, and the big one - patience!