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Home | Your community | Blogs | Sandi Wassmer | How Retinitis Pigmentosa rocks the world – paying homage during World Retina Week

Posted in Sandi's blog on 22 September 2009 | 5 Comments

When I was first diagnosed with RP, there was little known about it and I was basically told that I had the disease and that I would go blind someday. And that was that. No treatment. No cure. No idea what the heck caused it. No idea when I would go blind. No support or counselling. Well, to add a dash of irony, I was completely in the dark.

And now, some 30 years on, it is known that RP is not a single disease but a group of inherited diseases causing retinal degeneration and ongoing research into identifying the genes that cause RP is being carried out worldwide. Alongside this, two separate successful clinical trials have taken place right here in London. The first is retinal implants, also known in the media as the bionic eye, and the second is a revolutionary gene therapy. In addition to this, research into stem cell therapy is underway. It is certainly all happening for this rare group of inherited diseases.

OK, so we’ve now had a little lesson in RP, but what’s the point of today’s blog, you ask? Well, the research that is going on right here, right now is just so significant for so many people and so many reasons. The three strands of research now underway - retinal implants, gene therapy and stem cell therapy - will not only provide the foundation for potential treatments and cures for RP, they will also prove beneficial for future treatments of other eye diseases and the furtherance of gene therapies and stem cell therapies to treat a whole range of diseases.

Having said that, as no cure or treatment is on the market, I am not going to expend my energy thinking about the what ifs quite yet, but I am going to continue to support my beloved Action for Blind People, who provide the most incredible support to all of us VI folk and RP Fighting Blindness (formerly the British Retinitis Pigmentosa Society), which is the UK based charity that has been instrumental in funding and supporting this incredible research and I fondly but secretly refer to as 'the little engine that could' because they began at the time that I was diagnosed as a member-led organisation and are now a growing charity who, as us marketers say, seem to be getting a pretty awesome return on investment, But this type of medical research is not sexy enough to open wallets and from what I know, we are on the precipice with the only thing between where we are now and a cure is cold hard cash.

And so I am putting my money where my mouth is and have set up JustGiving pages for both Action for Blind People and RP Fighting Blindness in honour of World Retina Week. I have made the first donations to both. Please join me in making sure that the research continues and the people who need support in the interim get it.

Donate online at my JustGiving pages to either or both!

www.justgiving.com/WassmerAction

www.justgiving.com/WassmerRP

Online resources and further reading

RP Fighting Blindness / The British Retinitis Pigmentosa Society

Gene Therapy - UCL Institute of Ophthalmology and Moorfields Eye Hospital

Retinal Implants - UCL Institute of Ophthalmology and Moorfields Eye Hospital

UCL Institute of Ophthalmology Division of Molecular Therapy

About Sandi

Businesswoman Sandi Wassmer registered blind in 2008. In her blog, she shares with us the 'shenanigans of visual impairment'.

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