News, Links and Commentary
Monday, July 31, 2006
German Implant Research
German researchers are continuing work on a retinal implant, according to English-language site Deutsche Welle:
'Retinal Implants Are Ray of Hope for the Blind' 30 July 2006.
The article says that the implants are being tested on animals and gives information about other research into retinal implants.
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... researchers at the RWTH Aachen University of Technology developed a special device for sufferers of retinitis pigmentosa. The prosthetic consists of two parts: a high-tech pair of glasses and an implant that is surgically placed in the eye.
A tiny video camera is built into the glasses, along with an encoder that converts images into signals the nerves understand. The signals are then sent wirelessly to a receiver that has been implanted into the ocular lens.
The signals are then transferred to a micro contact film via a miniscule cable. These lie directly on the retina and stimulate with electrodes the nerve cells that lead to the optic nerve.
'Retinal Implants Are Ray of Hope for the Blind' 30 July 2006.
The article says that the implants are being tested on animals and gives information about other research into retinal implants.
Friday, July 28, 2006
How Do Google and Google Accessible Searches Compare?
Compare Google Web Search with Google Accessible Search thanks to Google Blogoscoped. I thought the accessible search would rank accessible sites higher but it looks like it cuts some sites out of the accessible results altogether.
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Avastin for Wet MD Unavailable to Sydney Eye Specialists
Newcastle woman Elizabeth Fordham, who has age-related macular degeneration, is featured in a Sydney Morning Herald article about the withdrawal of Avastin. Mrs Fordham has experienced improvement in her vision as a result of Avastin injections, but her next injection of Avastin will be her last:
'http://www.smh.com.au/news/national/withdrawal-of-cheaper-drug-no-better-than-a-poke-in-eye-for-blindsufferers/2006/07/26/1153816251768.html' (Sydney Morning Herald, 27 July 2006).
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Eugene Hollenbach, the retinal specialist who treats Mrs Fordham, said he was reaching the end of his supply of Avastin. He had been using the drug for two months and had already treated more than 30 patients.
"We're in limbo and don't know what to do with our patients," he said. "Either the price of Lucentis should come down significantly or we should be allowed to prescribe Avastin."
Both drugs are available only privately, but Avastin costs about $200 a shot, while Lucentis injections cost $2000 each. After a patient has bought three Lucentis injections, Roche will provide them free.
'http://www.smh.com.au/news/national/withdrawal-of-cheaper-drug-no-better-than-a-poke-in-eye-for-blindsufferers/2006/07/26/1153816251768.html' (Sydney Morning Herald, 27 July 2006).
Complementary Medicine Survey - Take Two
The The Complementary and Alternative Medicine (CAM) questionnaire for individuals with Retinitis Pigmentosa is now back online and the researcher is requesting that people with RP respond in the next four days. The questionnaire has been altered and people who have already completed the survey are asked to fill it in again. To respond, you must use the Internet Explorer browser and there is a Jaws version of the survey for users of the Jaws screen reader.
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Monday, July 24, 2006
Google Searches for Accessible Sites
Web sites that are more easy to access by blind and vision impaired users should rank more highly when searching with Google Accessible Search.
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Tuesday, July 18, 2006
Screen Reader Thunder
ScreenReader.net is a UK non-profit that has produced a free screen reading program for the PC called Thunder. Other products include the Lightning magnifier and Scan2Text, which converts scanned printed material into text.
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AMD and Stroke
Annals of Internal Medicine provides summaries of recent research articles for patients. 'Age-Related Macular Degeneration and Stroke' (18 July 2006, volume 145, issue 2, page I-37) explains recent research that shows an association between AMD and stroke.
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Melbourne Film Festival with Audio Description
The Other Film Festival is on in Melbourne 25-27 August. New cinema by, with and about people with disabilities will screen in an accessible venue, with all films audio-described and captioned. The program includes forums on topics related to disability culture.
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Monday, July 17, 2006
Acetazolamide and Edema
The last RetGen post (Internet Business for Brothers With RP) referred to a Cambridge Evening News article about Andrew Hall, who has RP and has recently opened his own online business. The story mentioned that Mr Hall experienced improved vision for his wedding by taking an unnamed prescribed drug. The Guardian gives more information:
'Blind groom can see for wedding day', 16 July 2006.
Acetazolamide, which may be known to some readers as Diamox, is used to treat edema rather than retinitis pigmentosa itself. For more information, visit MedlinePlus Drug Information: Acetazolamide.
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Mr Hall, who was diagnosed with Retinitis Pigmentosa during his teens, was prescribed the drug Acetazolamide, which dried up the excess water in his eyes and enabled him to see.
His mother, Patricia Hall, said it was a dream come true for her son.
"He was able to see a vision of Carolyn in her gown," she said. "It was not as clear as you or I might see, but he said she looked absolutely beautiful and the memory will stay with him."
Mrs Hall said her son could not take the drug continuously because of the severe side-effects it produces.
"It can't be taken for long, because it affects the nerves, gives you pins and needles and tics in your muscles," she said.
'Blind groom can see for wedding day', 16 July 2006.
Acetazolamide, which may be known to some readers as Diamox, is used to treat edema rather than retinitis pigmentosa itself. For more information, visit MedlinePlus Drug Information: Acetazolamide.
Internet Business For Brothers With RP
UK brothers Andrew and Chris Hall started an online business when RP made finding suitable employment more difficult:
'Internet provides vision for future', Cambridge Evening Times, 15 July 2006.
If you're planning an occasion, why not visit the Hall Occasions Web Site.
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With his mind still full of thoughts about his wedding, Andrew hit on a bright idea. "We'd found it hard to find all the finishing touches," he says. "I thought there must be a market out there for all the accessories - not just for weddings, but for all kinds of events."
And so Hall Occasions, the business Andrew now runs with younger brother Chris, was born.
Launched last month, Hall Occasions is a web-based business which the brothers run from their home. It offers everything from party invitations to tableware and decorations to order, at www.halloccasions.co.uk.
'Internet provides vision for future', Cambridge Evening Times, 15 July 2006.
If you're planning an occasion, why not visit the Hall Occasions Web Site.
Australians May Miss Out on Future Treatment with Avastin
Melbourne's The Age reports that Australians with the wet form of age-related macular degeneration could miss out on an affordable treatment:
'Anger over ditching of eye drug', The Age, 14 July 2006.
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Roche Australia said yesterday it would stop supplying Avastin to pharmacies that repackage it for the treatment of wet macular degeneration, a common age-related cause of legal blindness.
"Patients will go blind, there's no doubt about it," said retinal specialist Dr Wilson Heriot, the Victorian chairman of the Macular Degeneration Foundation. "That sounds emotive, but it is absolutely real."
Roche is accused of restricting access to Avastin to force patients onto Lucentis, which at $6000 is 10 times more expensive. The two drugs work exactly the same way but Lucentis is a smaller molecule and has been clinically tested for use in eyes. Avastin has been widely used but not formally tested.
Lucentis is distributed in Australia by Novartis but belongs to Genentech, an American biotechnology company majority owned by Roche. Genentech loses profit with every patient treated with Avastin.
'Anger over ditching of eye drug', The Age, 14 July 2006.
Eating Fish and Macular Degeneration
Scientists in Australia and the United States report further evidence that eating fish may help protect against age-related macular degeneration:
'Eating fish seems to protect against macular degeneration', CNN, 10 July 2006.
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The omega-3 fatty acids found in fish such as salmon are already known to help the heart and brain stay healthy. The new studies, appearing Monday in the Archives of Ophthalmology, add to evidence that fish eaters also protect their eyes.
The new studies aren't the strongest level of scientific evidence, but they confirm the findings of previous studies that also link fish consumption with prevention of macular degeneration.
A study of 681 elderly American men showed that those who ate fish twice a week had a 36 percent lower risk of macular degeneration. In the other study, which followed 2,335 Australian men and women over five years, people who ate fish just once a week reduced their risk by 40 percent.
The U.S. study also found that smokers nearly doubled their risk of the eye condition compared with people who never smoked.
'Eating fish seems to protect against macular degeneration', CNN, 10 July 2006.
Glaswegian Retinal Implant Research
Dr Keith Mathieson and colleagues from the University of Glasgow are receiving media attention for their work on a retinal implant:
'Scientists seek to restore sight' (BBC, 11 July 2006)
More information is available in the University of Glasgow media release, 'Scientists Search For Blindness Cure' (11 July 2006).
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Dr Mathieson, said: "Around 500 pixels would allow people to walk down the street and recognise faces.
"Beyond where we are today it might be possible to make smart chips which have memory in them which would allow action replay and slow motion."
Dr Mathieson, from the University of Glasgow's department of physics, is working on the project with Dr James D Morrison from the neuroscience and biomedical systems department.
'Scientists seek to restore sight' (BBC, 11 July 2006)
More information is available in the University of Glasgow media release, 'Scientists Search For Blindness Cure' (11 July 2006).
Friday, July 07, 2006
Conference of Educators in Vision Impairment
The South Pacific Educators in Vision Impairment Association will hold their biennial conference in Fremantle, Western Australia next January. Abstracts are due by 17 July 2006. More information is available at the SPEVI Conference Web site.
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Amber Contact Lenses
Nike and Bausch & Lomb have produced amber contact lenses that reduce glare. The lenses are designed for use by athletes and sportspeople.
'Contact lense designed to give athlete and edge' (CNN, 7 July 2006).
Many people with retinal degeneration will be aware that amber lenses block blue light, which is believed may damage the retina. For more information visit Bausch & Lomb: Nike Maxsight.
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The amber lens is for fast-moving ball sports, such as tennis, baseball, football or soccer. Grey-green is better for blocking glare for runners or helping a golfer read the contour of the ground.
'Contact lense designed to give athlete and edge' (CNN, 7 July 2006).
Many people with retinal degeneration will be aware that amber lenses block blue light, which is believed may damage the retina. For more information visit Bausch & Lomb: Nike Maxsight.
Monday, July 03, 2006
Therapeutic Cloning A Possibility for Victoria
The Victorian state government is considering legalising therapeutic cloning despite opposition from the Commonwealth government. The Age reports:
'Canberra to resist stem cell moves ' The Age, 3 July 2006.
From the Legislative Review Committee's December media release:
'Lockhart Review Supports Strong Regulation of Research Involving Human Emryos', Legislative Review Committee media release, 19 December 2005.
Relevant online resources include:
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The Commonwealth, through the National Health and Medical Research Council and the National Stem Cell Centre, is a key investor in stem cell research. Current laws allow some embryonic stem cell research, but ban the therapeutic cloning techniques under contemplation by Victoria. Therapeutic cloning allows embryos to be created for the purpose of harvesting stem cells. The technique is supported by many Australian scientists and patient groups, but opposed by churches and pro-life groups.
Former Federal Court judge John Lockhart recommended Australia go down that path in a landmark review presented to Canberra last year.
Cabinet has decided in principle to shelve the Lockhart recommendations, but the Prime Minister promised MPs a full party room debate in August before a final decision was made.
'Canberra to resist stem cell moves ' The Age, 3 July 2006.
From the Legislative Review Committee's December media release:
"The Committee has concluded that, based on its wide consultations, there is a need for an augmentation of the current system to allow research, within a rigorous ethical framework, into emerging scientific practices that will assist in the understanding of disease and disability," Mr Lockhart said.
'Lockhart Review Supports Strong Regulation of Research Involving Human Emryos', Legislative Review Committee media release, 19 December 2005.
Relevant online resources include:
- The National Health & Medical Research Centre - Human embryos & cloning information
- The Lockhart Review of Australia's Prohibition of Human Cloning Act 2002 and the Research Involving Human Embryos Act 2002.
- National Stem Cell Centre
- Monash Immunology and Stem Cell Laboratories (MISCL)
- 'Support grows for stem cell research: survey' at ABC Science Online, 30 June 2006.
Beep Baseball
Stephen Lyles plays beep baseball for the Colorado Storm. Lyles has retinitis pigmentosa and has played the sport, which is a variation on baseball adapted for people who are blind, for a decade. The Denver Post quotes him:
'Power of the beep: Game fashioned for blind also takes guts', Denver Post, 2 July 2006.
For more information about beep baseball, also called beep ball, visit the US organisation, The National Beep Baseball Association.
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"It made me feel more self-confident and made me feel that there was something more out there," Lyles said. "It's a chance to forget that you're blind.
"To actually throw down your cane and run as fast as you can, it's a great feeling."
'Power of the beep: Game fashioned for blind also takes guts', Denver Post, 2 July 2006.
For more information about beep baseball, also called beep ball, visit the US organisation, The National Beep Baseball Association.
Sunday, July 02, 2006
Lucentis Approved by FDA for Treatment of Wet MD
Genentech's anti-angiogenesis drug Lucentis is approved by the US Food and Drug Administration (FDA).
'FDA Approves New Biologic Treatment for Wet Age-Related Macular Degeneration', FDA media release, 30 June 2006.
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The Food and Drug Administration (FDA) today approved Lucentis (ranibizumab injection) for the treatment of patients with neovascular (wet) age-related macular degeneration (AMD). Lucentis is the first treatment which, when dosed monthly, can maintain the vision of more than 90 percent of patients with this type of AMD. Lucentis is a new molecular entity (NME), meaning it contains an active substance that has never before been approved for marketing in any form in the United States.
'FDA Approves New Biologic Treatment for Wet Age-Related Macular Degeneration', FDA media release, 30 June 2006.
Saturday, July 01, 2006
Survey on RP and Complementary Medicine
A US researcher is planning to apply for a grant to fund a study of retinitis pigmentosa and complementary/alternative medicine. To help her application, she would like people who have RP to respond to an online survey that asks about current use and knowledge of alternative therapies. If you're interested in participating (you do not need to have used alternative therapies and the survey is anonymous) please let me know and I'll forward you details. I learnt about this survey through the RPList.
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Australian Albinism Conference
The Albinism Fellowship of Australia is hosting a conference for people who have albinism, parents of children with albinism, and interested professionals. The conference is on 25 - 27 August 2006 at the Y Hotel in Sydney.
People who can't make the conference but who are still interested in receiving support or information from the fellowship are encouraged to become members. Members receive regular newsletters and invitations to attend state-based get togethers.
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People who can't make the conference but who are still interested in receiving support or information from the fellowship are encouraged to become members. Members receive regular newsletters and invitations to attend state-based get togethers.