LCA Articles
News, facts, and information about the genetic disease Leber's Congenital Amaurosis.
LCA FAQ
Maybe you've just realized that your infant is blind and you've come across the acronym LCA in your research, or maybe your child has been given a diagnosis of LCA (Leber's Congenital Amaurosis) from your doctor. Either way, I'm sure you're confused and want to know as much as you can about this rare disease. I've compiled the most important questions I was asking when I first began learning about LCA—and I've done my best to answer them as completely as possible.
LCA Gene Therapy Results
Trials to test the safety of gene therapy on LCA patients with the RPE65 mutation have been ongoing in both the U.S. and the U.K. Both teams released reports on these studies in the New England Journal of Medicine on April 27, 2008 and the results are promising!
What's an ERG?
If you are the parent of a baby or young child who has been tentatively diagnosed with LCA, your doctors probably suggested that your child have an ERG in order to confirm the diagnosis. You're probably wondering what the test is like and whether or not you should do it now. I will explain what the test was like for our family and hopefully this will help you make your own decision.
What is genetic testing?
If you are considering genetic testing, you probably have lots of questions about the test as well as the results. We'll try to answer some of those questions here. . .
LCA & Kidney Health
LCA can sometimes be associated with Senior Loken Syndrome or Alport Syndrome, both of which affect the kidneys. We've put together a list of tests that should make sure you or your child's kidneys are in perfect working order.
LCA Gene Therapy Clinical Trials Update
Remember when everyone was talking about those doctors who had found a way to "cure" LCA in dogs? We were all eagerly awaiting the clinical trials to begin in humans, but these things just seem to move so slowly! Well, we finally have some new news!
Retinal Microchip in Clinical Trials
Dr. Humayun and his team have created and implanted a micorelectronic retinal chip designed to restore sight to blind patients. Find out how the patients are doing and what the doctor plans to do next.
Excited About Stem Cells!
Can embryonic stem cell therapy benefit patients with LCA? New breakthroughs in research allow scientists to develop their own line of stem-cell-based retinal cells which can then be used to regrow damaged retina. Animal experiments have been successful so far and human research is on the horizon!
LCA Gene Therapy in the Egg
First dogs, now chickens! Can humans be that far off? As reported earlier this year, scientists have found a way to restore sight to blind Briard dogs afflicted with Leber's Congenital Amaurosis (read about it here). Now, a University of Florida team has used a similar gene-therapy technique to deliver healthy genes to blind chickens - while still in the egg!
LCA and Education
How smart are patients with LCA? According to one study, they're definitely above the US national average. Here's a break down of the results...
LCA Gene Therapy Clinical Trials Approved!
On December 13th, 2005, a team of doctors met with the National Institute of Health (NIH) to ask permission to begin clinical trials of a new gene therapy technique on humans that has the promise to cure one type of Leber's Congenital Amaurosis (LCA). Later that same month, the clinical trials were approved unanimously. Here are some details...
Telephone Support Group for Parents of Children with LCA
Join a new telephone support group organized by The Jewish Guild for the Blind.
FRR Needs Your Help!
The Foundation for Retinal Research, the leading organization funding research for LCA, needs your help! Find out what you can do to help this amazing organization.
GoodSearch
We all want to make a difference but sometimes we just can't figure out how. Well, now you can help donate money to the Foundation for Retinal Research just by surfing the internet!