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News, Links and Commentary

Monday, November 29, 2004

Giving A Chance To See The Gum Trees, And Lots of Plum Trees 

Australian TV personality Don Burke of Burke's Backyard is almost as well-known here for his woolly jumpers as he is for his enthusiasm in the garden. After 17 and a half years, the final episode of Burke's Backyard aired on Friday night.

Don has donated the jumper he wore on the very first episode of the show for auction by Retina Australia. With three days left, the jumper has attracted bids as high as $6 100 at online auction site eBay.

Retina Australia offers support to people affected by retinal degeneration and raises funds for Australasian research that will contribute to finding a cure or treatment for retinal degenerative diseases. A donation such as this will help Retina Australia to continue this work, offering hope to individuals and families facing the effects of vision loss.

For more information, visit the Burke's Backyard Web site. A link to the eBay auction is given in the righthand column on the front page.

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Wednesday, November 24, 2004

Right On The Tip Of My Tongue 

The New York Times reports progress by University of Wisconsin researchers working on the BrainPort, a device that allows visual input to be felt by the tongue rather than seen through the eyes:


Blind people who have used the device do not report lasting effects. But they are amazed by what they can see. Mr. Weihenmayer said the device at first felt like candy pop rocks on his tongue. But that sensation quickly gave way to perceptions of size, movement and recognition.
'New Tools to Help Patients Reclaim Damaged Senses' (The New York Times, 23 November 2004).


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Sunday, November 21, 2004

Summer Issue of RA Queensland's Newsletter Out Now 

The summer issue of Retina Australia Queensland's newsletter Eye - Q, is now available online. Articles include information about stem cell research, sculpture classes, the recent Retina Australia Congress in South Australia and a call for people with MD and who still drive to participate in a local research study.

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Saturday, November 20, 2004

Stem Cells Successfully Transplanted in Mice With RD  

In a study conducted at the Schepens Eye Research Institute in the US, retinal stem cells taken from healthy mice were transplanted into the retinas of mice with retinal degeneration. The stem cells developed into retinal cells. Another positive outcome of the transplantation was that already dying cone cells appeared to "regain or retain their function."


To test whether the mice with transplanted stem cells could see better, the team then placed them and the control mice (without the transplants or with non-stem cell transplants) in dark cages and flashed a series of increasingly lower level lights at both groups over a period of time. Mice are photophobic and stop their normal activity when they detect light. The researchers took advantage of this natural response and found that the mice with the transplanted tissue continued to respond to the light as it reached the lowest levels. The control mice did not.
'Study shows stem cells can preserve vision,' Schepens Eye Research Insitute public relations release at EurekAlert, 18 November 2004.


The research appears in the November 2004 issue of Investigative Ophthalmology and Visual Science. The abstract is freely available online (Multipotent Retinal Progenitors Express Developmental Markers, Differentiate into Retinal Neurons, and Preserve Light-Mediated Behavior,' Klassen, H. and others, Volume 45, pp 4167-4173).

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Friday, November 19, 2004

Surf On and Listen Up 

A new search engine and Web directory is promoting only Web sites that are accessible. Net-guide.co.uk is a small search engine that includes an accessibility rating with each listed Web site.

Speegle is a search engine that speaks search results. Users are given the option of choosing a female (American) voice or a male (Scottish) voice. Speegle does not speak every word on the site and does not eliminate the need for screen readers or magnifiers. People with dyslexia and other reading disabilities or who have low vision may find Speegle useful. Speegle also speaks the top news headlines from a small selection of newsfeeds.

Speech-enabled Web sites are becoming more common, thanks to companies such as browsealoud and readspeak. Users are able to listen to content for free by downloading a plug-in for their browser. Web sites must subscribe to the speech-enabling service. Web sites must meet accessibility standards for the service to work. Again, speech-enabled Web sites will not replace the need for screen readers by people who are blind. More information is available in the latest issue of E-Access Bulletin (Issue 59, November 2004).

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Thursday, November 18, 2004

Columnist Writes of Relationships and RP 

Rebecca Atkinson now has a weekend column called 'Losing Sight ...still looking' in UK newspaper The Guardian. Rebecca, who has Usher Syndrome, first came to my attention when I discovered her article 'It Might Help If I Didn't Wear Heels' (The Guardian, 29 March 2004). Her most recent column is 'Losing sight ... still looking' - 13 November, 2004. Thanks to Why Shecried for letting me know about the column and for providing a link!

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Tuesday, November 09, 2004

Creative Pursuits For People With RP 

Three people with retinitis pigmentosa have recently featured in the news because of their creative work or hobbies.

Villette Neil is a Jamaican dressmaker and is featured in a recent article in The Jamaica Observer (The Blind Dressmaker', 8 November 2004).

Ray Howard is a 73-year-old retiree who plays classical music at a hospice in Colorado, USA, twice a week:


Ray had given up the guitar for 15 years, too busy earning a living. In 1993, he took up the instrument again. "I picked it up during the O.J. trial because I was so frustrated with the way it was going," Ray said. "I couldn't watch it anymore."

So he found his "dream guitar," a Kohno, and began learning classical guitar through talking books and tapes. Now he listens to classical guitar CDs and knows about 50 songs by heart.
'Volunteer plays notes of comfort' The Greeley Tribune, 1 November 2004.


Harold Riley, who has Usher Syndrome, continues woodworking, making model trains and cars:

"I don't think of myself as more special than anyone else who is deaf and blind," Riley explained through the help of his wife and interpreter, Donna. "This is who I am, and making toys is what I do."

Riley, 62, acknowledged that he has never heard the excited hum of one of his four table saws as he gets ready to create yet another of his more than 25 wooden designs.
'Man conquers vision loss to create wooden models', The Detroit News, 17 October 2004.

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Canadian Gene Therapy May Inhibit Photoreceptor Death 

Robert Korneluk Ph.D, director of the Solange Gauthier Karsh Laboratory in Ottawa, recently announced that a gene therapy currently being investigated may be available in three years time:


The disease [RP] is caused when genetic defects lead the cells in the retina to die prematurely. Mr. Korneluk and his coworkers, who are conducting research on XIAP, the X-linked inhibitor of apoptosis (cell death), believe that XIAP therapy can make the retina's photoreceptor cells more resistant to dying, and therefore preserve sight.
'Researcher touts 'potent' gene therapy', The Ottawa Citizen, 7 November 2004.


The announcement was made during a presentation at The Foundation Fighting Blindness - Canada's Vision Quest 2004 conference, held on 6 November in Ottawa.

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Friday, November 05, 2004

Olympian Heads Up Stargardt's Team 

Canadian Olympic and World Champion swimmer Chris Renaud has joined the Stargardt's Team at MD Support. Chris was diagnosed with Stargardt's Disease five years ago, just before the Sydney 2000 Olympic Games, at age 22. If you have Stargardt's, you can join Chris and the Stargardt's Team by visiting MD Support.

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Thursday, November 04, 2004

Cortical Implant Researcher Dies 

Artificial vision researcher Dr William Dobelle died last month in New York ('Dr. William Dobelle, Artificial Vision Pioneer, Dies at 62' - The New York Times, 1 November 2004). Dr Dobelle's research into the cortical implant, a device that delivers visual information directly to the brain, has been conducted through the Dobelle Institute in Portugal. The Dobelle Institute Web site provides more information about Dr Dobelle, his work and the future of his experimental research.

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Butterflies and RP Inspire Colourful Home 

Californian J Jackson created a colourful home inside and out when wife Sonja lost the sight in her right eye through retinitis pigmentosa. Eight years after J began, their home has a butterfly motif that draws curious visitors off the street ('Vision of love family & self,' The Salinas Californian, 16 October 2004).

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Advances in Adult Stem Cell and Retinal Transplant Research 

Canadian researchers from the University of Toronto have shown that stem cells taken from the human eye will regenerate:

To test the potential of the stem cells in a living organism, the researchers transplanted them into the eyes of mouse pups. Four weeks after transplantation, most of the human stem cells had appropriately migrated, differentiated and integrated at the right developmental times.
'Stem Cells Make Eye Contact,' Betterhumans, 25 October 2004.

The research was published online 25 October 2004 in the Proceedings of the National Academy of Sciences before print (Coles, B. et al, 'Facile isolation and the characterization of human retinal stem cells,' PNAS, November 2 2004, Vol. 101, No. 44, pp 15772-15777).

Meanwhile, in Louisville, Kentucky, USA scientists have successfully transplanted retinal tissue, taken from foetuses, into the eyes of patients with retinal degeneration:

Three years ago Elisabeth Bryant believed she would be blind for the rest of her life. "I couldn't see anything," she says. Now, although her vision is not perfect, she can see well enough to read, play computer games and check emails. Bryant has retinitis pigmentosa, an eye disease that has blinded four generations of her family. What has saved the sight in one of her eyes is a transplant of a sheet of retinal cells. The vision in this eye has improved from 20:800 to 20:84 in the two-and-a-half years since the transplant- a remarkable transformation. So far, six patients with either advanced retinitis pigmentosa or macular degeneration have had similar transplants.
'Fetal tissue restores lost sight' (New Scientist via EurekAlert 30 October 2004).

The article discusses both the treatment and the need to develop guidelines on the use of foetal cells in treating disease.

Note: This entry was updated on 12 November 2004 when I realised that I had incorrectly referred to the transplanted foetal retinal tissues as 'stem cells.' My apologies for causing any confusion. Thanks to discussion of the research on RPList I became aware of my mistake.

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Music, Architecture and RP 

Joel Deutsch, a regular contributor to the RPList, described his experience of touring the Walt Disney Concert Hall in an essay recently published in the Los Angeles Times:


"I'm no architectural expert," she cautioned me as we began our tour of the
building's exterior. I assured her that it didn't matter. On the Web, with
the help of my screen reader program, I'd pored over articles describing the
hall's idiosyncratic asymmetries, its billowing curves, I imagined, making
it look something like an extraterrestrial Spanish galleon about to sail over
Bunker Hill. All I needed was for her to help me make sense of the place.
'Music of the Mind,' Los Angeles Times Magazine, 17 October 2004.


The article is now archived and available for a small fee at the newspaper's Web site. If you are interested in reading more of Joel's writing on life with RP, visit Not Fade Away, an online exhibit of the San Francisco Exploratorium.

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Wednesday, November 03, 2004

Settling In Again 

After a few weeks away I'll soon be able to write about the Retina Australia Congress, recently held in South Australia, and my visit to give a blood sample to the Inherited Retinal Disease Register. My #ozrplist friends and I enjoyed our few days together in Adelaide, taking in the beach at Glenelg, the International Rose Garden, the O-bahn guided bus route, the German-founded township of Hahndorf and quite a few pubs along the way. I'm also posting from a new computer at home, which should speed up my blogging. I'll be catching up on news and information relevant to people with RD very soon.

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