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News, Links and Commentary

Monday, January 31, 2005

Wikipedia Entry on Retinitis Pigmentosa 

Wikipedia is "a free-content encyclopedia that anyone can edit." Recently I noticed an article on Retinitis Pigmentosa at Wikipedia. The article contained useful information about genetic testing for RP.


Today I added a short paragraph to the article, naming the potential treatments for RD that are currently being researched. If you feel you would like to correct, update or add to this article you should be able to do so by visiting the article's Web page. Click on the link named 'expanding it' at the bottom of the article and then enter changes into the text box displayed. You may choose to create an account and log in before you begin editing but this is not required. Unfortunately, I do not know if the site is accessible to people using adaptive technology.

Many Web surfers visit Wikipedia for initial information on subjects unfamiliar to them. Therefore it is important that the article on Retinitis Pigmentosa, and articles on related subjects such as Usher Syndrome and Macular Degeneration, are accurate and relevant.

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Sunday, January 30, 2005

Stem Cell Researcher to Speak at Unite For Sight Conference, Harvard 

Unite For Sight Second Annual International Health Conference will be held at Harvard University in Massachusetts on April 2 and 3, 2005. The theme will be "Eyes on International Collaboration: Promoting Health From Campus to Lab to Field." Dr Michael J. Young, PhD of Harvard will be presenting on 'Stem Cells to the Retinal Rescue' at the conference and Dr. Sethuraman (Panch)
Panchanathan, PhD will speak on 'Adaptive Technology for the Sight-Impaired.'

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Design For All A Theme of Vision 2005 London Conference 

Inclusive design for people with sight problems will be one of the themes explored at the Vision 2005 to be held in London on 4 - 7 April. The conference will be hosted by the Royal National Institute for the Blind, with Action for Blind People and The Guide Dogs for the Blind Association as co-hosts.

I first read about this in 'Vision 2005 conference addresses accessibility issues' (Net Perspectives, 19 January 2005) via RPList.

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Prescription Drugs and the Eye 

Many people with degenerative retinal conditions are concerned that drugs taken for other conditions may speed the loss of vision. Dan Roberts from MD Support recently recommended three sites providing information on eye health and drug interactions in a post to RPList. The sites are -



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Saturday, January 29, 2005

Writer Jan Eckles Shares Christian Outlook on RP 

Author and speaker Jan Eckles tells of her experiences with retinitis pigmentosa and of losing a child in her book Trials of Today, Treasures for Tomorrow. Jan also writes about her Christian faith in the book, which can be ordered through her Web site.

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Friday, January 28, 2005

Artificial Vision Review and German Retinal Implant Updates 

The first issue of the British Journal of Medicine for 2005 includes a review of artificial vision research, 'Artificial means for restoring vision' (Hossain, P. and others, British Journal of Medicine, 1 January 2005, Volume 330, Number 7481, pages 30-33). The article is not freely available but the first 150 words may be read online.


IIP Technologies in Bonn, Germany have reported positive early results after testing the safety of retinal implants on twenty patients with RP. Nineteen of the German and Austrian participants reported seeing spots of light during the tests. Read more in 'Artificial retina brings light to the blind' (Macleans.CA, 21 January, 2005).

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Thursday, January 27, 2005

Genetics Information For Patients 

Ever wondered how genes are named? The US National Library of Medicine's Genetics Home Reference offers an answer to this question and many others that will be relevant to people with genetic conditions such as RP. The site includes a handbook, glossary and a browsable list of genetic disorders. So far Usher Syndrome and retinoblastoma are the only retinal diseases referenced.

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Sunday, January 23, 2005

Accessible Online Communities 

The Zone BBS is an online community that provides message boards, free online games, voice chat and private messaging. The site is not specifically for people who are blind or vision impaired but attracts many members who are because of its accessible design.

The Sonokids Foundation has developed an accessible online community for children. Sonokids offers games that teach children who are blind or vision impaired to surf the Internet and their web authoring tool MaX gives children the chance to produce their own accessible Web pages. The site is available in three languages - English, Dutch and Danish - and will soon feature an Internet radio station. Stay tuned!

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Thursday, January 13, 2005

Light by John Milton 

English 17th century poet John Milton, famous for works such as Paradise Lost and Paradise Regained, lost his eyesight in adulthood. Below is a poem that people with retinal degeneration may find relevant.


Light

HAIL holy light, ofspring of Heav'n first-born,
Or of th' Eternal Coeternal beam
May I express thee unblam'd? since God is light,
And never but in unapproached light
Dwelt from Eternitie, dwelt then in thee,
Bright effluence of bright essence increate.
Or hear'st thou rather pure Ethereal stream,
Whose Fountain who shall tell? before the Sun,
Before the Heavens thou wert, and at the voice
Of God, as with a Mantle didst invest
The rising world of waters dark and deep,
Won from the void and formless infinite.
Thee I re-visit now with bolder wing,
Escap't the Stygian Pool, though long detain'd
In that obscure sojourn, while in my flight
Through utter and through middle darkness borne
With other notes then to th' Orphean Lyre
I sung of Chaos and Eternal Night,
Taught by the heav'nly Muse to venture down
The dark descent, and up to reascend,
Though hard and rare: thee I revisit safe,
And feel thy sovran vital Lamp; but thou
Revisit'st not these eyes, that rowle in vain
To find thy piercing ray, and find no dawn;
So thick a drop serene hath quencht thir Orbs,
Or dim suffusion veild. Yet not the more
Cease I to wander where the Muses haunt
Cleer Spring, or shadie Grove, or Sunnie Hill,
Smit with the love of sacred song; but chief
Thee Sion and the flowrie Brooks beneath
That wash thy hallowd feet, and warbling flow,
Nightly I visit: nor somtimes forget
Those other two equal'd with me in Fate,
So were I equal'd with them in renown.
Blind Thamyris and blind Maeonides,
And Tiresias and Phineus Prophets old.
Then feed on thoughts, that voluntarie move
Harmonious numbers; as the wakeful Bird
Sings darkling, and in shadiest Covert hid
Tunes her nocturnal Note. Thus with the Year
Seasons return, but not to me returns
Day, or the sweet approach of Ev'n or Morn,
Or sight of vernal bloom, or Summers Rose,
Or flocks, or herds, or human face divine;
But cloud in stead, and ever-during dark
Surrounds me, from the chearful waies of men
Cut off, and for the Book of knowledg fair
Presented with a Universal blanc
Of Natures works to mee expung'd and ras'd,
And wisdome at one entrance quite shut out.
So much the rather thou Celestial light
Shine inward, and the mind through all her powers
Irradiate, there plant eyes, all mist from thence
Purge and disperse, that I may see and tell
Of things invisible to mortal sight.

John Milton (1608-1674)

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Friday, January 07, 2005

Only In Canada - Ice Hockey With Usher Syndrome 

Toronto woman and ice hockey player Megan McHugh talked a little about her work, Usher Syndrome and (naturally) ice hockey last night on Canadian TV. To view the interview, visit CTV News and click on the link named 'CTV Success Story.'

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Tuesday, January 04, 2005

Miles Flies High From Britain To Australia 

Miles Hilton-Barber is hoping to break the world micro-flight record with a trip from Britain to Sydney. Hilton-Barber (56) is blind due to RP and will be raising money for the UK's Royal National Institute for the Blind.


During take off, the computer will relay his ground speed, airspeed and height from the runway. This will be repeated every few seconds.

Once in the air, the onboard global positioning system will allow Hilton-Barber to hear his location and airspeed and to assess whether he is following the route entered into the computer before take-off. If he needs to make an adjustment, different tones will alert him to how steeply he is banking and whether he is turning to port or starboard.
'Blind pilot sets controls for a 12,000-mile flight,' The Times Online, 2 January 2005.

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