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, 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?
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?
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...
Eye Conditions and Syndromes
Gut Microbes Linked to Blinding Autoimmune Disease
New research shows the autoimmune eye disease could be linked to gut microbes.
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.
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.
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.
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.
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...
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.
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...
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...
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).
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.
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!