Posted on June 30th, 2010 by Amber
The National Trust in Britain has teamed up with Jarvis Cocker, best known as the former front man for the band Pulp, to create an album comprised solely of natural sounds taking the listener on an audio journey around Britain.
The album is available for free on their website and well worth listening to. It moves freely, one track to the next, as the listener “walks” along a gravel path (crunch, crunch, crunch), listens to birds, hears waves lapping up on the edge of a pond, and then moves to the interior of an old manor. You hear an old fashioned music box, clocks ticking and chiming, and (my favorite) the incoherent chatter of children in a school room.
It’s both soothing and evocative. Very cool to play for your kids!
Click here to learn more.
Posted on June 29th, 2010 by Amber
Our friend Fran attended the 16th conference organized by Retina International, which was held in Italy last weekend. It wasn’t specifically on LCA but most LCA experts were there! It was very interesting. Here are her highlights:
Dr. Jean Bennett presented the astounding results of the RPE65 trials. Children who were nearly blind can now play baseball and walk without a cane! We all had read that, but to hear it from her was exciting.
Dr. Koenekoop showed the incredible results of the QLT drug for LRAT LCA. After only nine days of oral administration, vision improved dramatically, and the visual field kept increasing until it tripled! It produced improvements even in an adult patient. He said they will now test it on people with RPE65. To the question about future application of similar drugs to different LCA genes, he said that it may be possible, but didn’t go into details.
Many researchers said that soon gene therapy trials for other genes will be planned. Jean Bennett said that she cannot say which will come next, but different labs are working on diferent animal models. Some of the candidates for clinical trials that were mentioned were AIPL1, LCA5, RPGRIP, Gucy2d, and CEP290. CEP290 is being studied a lot, the problem with it is that it is a large gene, but many labs are working on building the right vector to get it into the retina; once it is found, things should go fast from mice to cats to humans.
A talk was given about the retina prosthesis. It’s promising, though the visual field it allows is still pretty small. We were shown a video where a blind person receiving the implant was able to read a few letters on a chart and recognize some objects. For now they will not try it on people blind from birth.
Unfortunately I missed the lecture on stem cells by Robert Ali. Comments I heard were that research is progressing, but application is a bit further away.
An exciting new development I had never heard about before is photoswitch, which is a strategy that aims to activate ganglian cells of the retina to interpret light and send signals to the brain, bypassing photoreceptors. It isn’t working yet, but Dr. Chader was confident that it might work soon, and make it to human trials. This is wonderful as it would work even in people with no living photoreceptors.
A lot was said about drugs like nerve growth factors which can prolong the life of photoreceptors, but I didn’t follow those too closely, sorry.
If anyone has any questions of course feel free to ask, and I’ll see if I can remember more.
Thanks Fran! You can read more about Fran and her visit to the conference on her blog: LCA Blog.
Posted on June 29th, 2010 by Amber
I’m always on the lookout for cool technology that makes life easier for people with physical and sensory disabilities. This article lists some neat gadgets that can help people access their computer.
Click here to read the article.
Posted on June 28th, 2010 by Amber
Just in time for summer travel, here’s some info on how to attain a free pass to all the National Parks in the U.S.!
The National Parks and Federal Recreational Lands Pass is a lifetime pass for U.S. citizens or permanent residents with permanent disabilities. Documentation is required to obtain the pass. Acceptable documentation includes: statement by a licensed physician; document issued by a Federal agency such as the Veteran’s Administration, Social Security Disability Income or Supplemental Security Income; or document issued by a State agency such as a vocational rehabilitation agency.
The pass provides access to, and use of, Federal recreation sites that charge an Entrance or Standard Amenity. The pass admits the pass holder and passengers in a non-commercial vehicle at per vehicle fee areas and pass holder + 3 adults, not to exceed 4 adults, at per person fee areas (children under 16 are admitted free).
The pass can only be obtained in person at the park. The Access Pass provides a 50 percent discount on some Expanded Amenity Fees charged for facilities and services such as camping, swimming, boat launching, and specialized interpretive services. In some cases where Expanded Amenity Fees are charged, only the pass holder will be given the 50 percent price reduction. The pass is non-transferable and generally does NOT cover or reduce special recreation permit fees or fees charged by concessionaires.
Click here to learn more.
