The WA Retinitis Pigmentosa Foundation Inc.

About the WA Retinitis Pigmentosa Foundation

The Foundation was formed in 1978 by Dr Arnold Cook and has been committed since then to raise funds for research into Retinitis Pigmentosa (RP) and other inherited retinal diseases. Over the ensuing years in excess of $2.5 million has been raised for research.  The Foundation has over 700 supporting members in WA, with one in every eighty families being affected by this disease.

The Foundation has an ongoing project, the WA Inherited Retinal Disease Register (IRDR) and DNA Bank, which was commenced in 1984 at Sir Charles Gairdner Hospital. Over the past 25 years over $500,000 has been raised for this project. A commitment was made in 2008 by the Foundation for additional funding of $390,000 over the next 3 years.

With it being generally accepted that gene therapy activities are no longer regarded as solely research related activities, they are now close to being part of the clinical diagnosis and treatment process. The continued development of the IRDR register and DNA Bank is a vital need for West Australians in order to be prepared for any major medical breakthroughs.

What is Retinitis Pigmentosa?

Retinitis Pigmentosa (RP) is the name given to a group of diseases, which affect the retina of the eye. The retina, located in the back of the eye, is the part of the eye that acts like the film in a camera.  It is a delicate layer of cells which picks up the picture and transmits it to the brain - where "seeing" actually occurs. In RP, the retina begins to degenerate, which causes vision to diminish. 

One of the earliest symptoms of RP is difficulty seeing at night or in dimly lit places (night blindness). Later there is a reduction in peripheral vision.  As yet there is no effective treatment or cure for RP.  RP is the leading cause of youth blindness in Australia. It is second only to diabetes as a cause of adult blindness in working - age people in Australia.  About one in every 3,500 people are affected by RP.

To find out more on Living with RP click here.