Eye Conditions And Syndromes 70
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 our children how to see the humor in everything!
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!
Laura Steinbusch reports on exciting news from ProQR and their trials for a treatment for blindness caused by LCA10-CEP290.
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!
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 stop.
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!
"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."
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!
Do you know the facts of Cortical Visual Impairment (CVI)? Here are 8 myths you may have heard that just aren't true!
Spark Therapeutics continues to test their treatment for LCA (RPE-65) and they find that it is safe, efficient and provides long term benefits
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 injury.
A doctor in the Netherlands is developing a treatment for LCA that could help patients with the CEP290 mutation.
A new pilot app from Boston Children's Hospital allows doctors in their Ophthalmology Department to remotely monitor patients after surgery for strabismus.
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.
Gene-editing technology could personalize how we treat eye diseases.