This week we ran an event in Ilford, London, as part of our new efforts to reach more people with RP and provide them with information and support, and of course ask them to join us in our fight against the disease.
The event was aimed in particular at the Asian community in this area, because statistically more people in Asian and Asian British communities suffer from RP than in white British groups. We had a good turnout and the audience included people from all backgrounds which was really pleasing.
We ran the event as an information day, with a presentation from Professor Shomi Bhattacharya being the key item. We wanted to give as much information as we could, including on the latest research progress, so it was great to have such an eminent scientist help us with this inaugural, experimental event.
It’s clear that there is a real “hunger for information”, and that we can use this type of event to reach people with RP. However it’s all a question of resources and this is why, in the past, we’ve found it difficult to increase our membership. It takes time to organise any event, no matter how straightforward.
We did this one with the help of a couple of members who live in the area, and we will want to take advantage of other members willingness to help us in similar ways in the future. We also have a bid outstanding with a charitable trust for money to be able to employ an Outreach Worker, which will really make a huge difference to this type of activity.
Professor Bhattacharya spoke about retinitis pigmentosa, starting with an explanation of how the retina starts the whole process of seeing by turning light into electrical signals. He went on to explain how various genetic flaws lead to the retina failing to do this properly, because the cells that generate the signals – photoreceptor rods and cones – are unable to survive in an RP patient.
He touched on how gene therapy will allow surgeons to replace the faulty genes in a patients eye with good copies of the gene, and that this type of therapy is at clinical trials stage. However he acknowledged that there are limitations to the approach – limiting treatment as it does to people with a very specific and identified gene flaw. He also outlined how other threads of research are offering hope after many years of work, including the use of stem cells and artificial retinal implants (see other articles in this blog using the search function at the top of the page).
Perhaps most importantly, he was able to answer questions from the audience about their own particular concerns. It was this that highlighted to us the importance of this type of event as there were a healthy number of intelligent questions, pitched at all levels from simple understanding of what is happening in an RP eye, to more in depth questions about the research work.
All in all, a significant event which will inform how we do this type of thing in the future. If any member reading this would like to help us organise something in your own community, please get in touch by using the comment link at the foot of this article.
The picture, by the way, shows a report about the event that appeared in “The Nation”, a UK Asian newspaper. I hope this leads to more enquiries about our work and about joining.
To join RP Fighting Blindness, visit our main web page.
Tags: asian, bhattacharya, bme, ilford, london, outreach, retinitis
