RP Action Man

Colin at the controls

Trustee Colin McArthur has always been prepared to stick his neck out for the charity, and is always trying to think of ways to raise awareness of both the organisation and of retinits pigmentosa. Today he reached new heights when in a great stunt he took the controls of an in-service cross-Solent catamaran, complete with passengers, some of whom even knew what was happening and still took their seats!

This was all thanks to the company Wightlink, who did us proud, and allowed us to collect on the ferries and catamarans too, making announcement and treating us as their sponsored charity for the day. For Colin, it was part of the launch of a new research project at Southampton General Hospital, where Prof. Lotery is looking at how cells from other parts of the eye might be used to generate photoreceptor cells for transplantation back into the retina. The local focus for fundraising is quite strong, even though the project will bring benefit, if successful, to people with RP around the country and abroad.

To me, the involvement of the company is important too. If we are to be successful in increasing our income (and so up the amount we can spend on research) we will have to create more relationships like this and then turn them into regular opportunities to showcase our work and raise money. I am very grateful for the way Wightlink took the proposal from Colin that he be let loose on their flagship seriously, and for the way they supported us on the day.

http://www.wightlink.co.uk

http://www.justgiving.com/catseyes

Colin has now piloted a hovercraft, flown a glider, taken the controls of a lifeboat, captained a passenger catamaran, and piloted a light aircraft. Colin is looking for the next challenge, if you can help set one up, let me know on 07720 444084.

Everest Trekkers Depart Our Shores

Everest poses the ultimate trekking challenge

Today 4 intrepid and brave members have set off on a fantastic journey of their lives, trekking in Nepal to Everest Base Camp. What’s more, 2 of our amazing quartet have RP - our members are proving once again that the condition does not have to be a barrier to some stunning experiences.

Louise, Stephen, Jo and Liz have each committed to raising £5,000 in sponsorship to take part on the expedition, with the profits from the adventure going to our medical research fund. In fact, they are working as a team, and have already raised over £14,000.

The trip lasts for two weeks, because the trek timetable has to allow for acclimatisation to the altitudes. On our main website we’ll be posting photos and reports if we get them (communication, as you might expect, can be a little ropey), and we’ll certainly include a report after the event.

In the meantime I want to record my gratitude on behalf of all of our members to the whole team. You can post a message of support by responding to this item with a comment, or you can make a donation to the team at http://www.justgiving.com/lizcassidy/

If you are feeling adventurous, our next expedition is in September 2010, to Namibia, where we will be trekking to a remote village and then spending several days with the local people building a school playground. If you would like to take part please call 01280 821334. We want 15 participants with RP and 15 with full sight to take part, and the trip is already half filled nearly a year in advance. Let us know quickly if you are interested.

Sandi Wassmer Blogs About RP

Sandi Wassmer

Sandi Wassmer – businesswoman, blogger, supporter, person with RP, and AFBP activist, blogs regularly. Her most recent entry “How Retinitis Pigmentosa rocks the world – paying homage during World Retina Week” is well worth a visit and a read.

In fact, as a result of this I’ve used her blog to start a listing of RP blogs on the right hand side of this page. If you blog about RP, or if you have RP and blog about anything else, please let me know and let’s exchange links.

A set of RP Fighting Blindness links

Regular readers of this blog will already, I hope, be members of RP Fighting Blindness or know about our links. Occasional visitors might like to surf the following and catch up with us a bit.

Main RP Fighting Blindness website
http://www.brps.org.uk

Become a Member  and support our research
http://www.brps.org.uk/index.php?tln=supportus&pageid=153

Our big music event
http://www.musicforsight.org.uk

Facebook Information and Support
http://tinyurl.com/rpfacebook

Follow us on Twitter
http://www.twitter.com/rpfb

Sign up for free monthly e-Bulletins
http://www.brps.org.uk/index.php?tln=contactus&pageid=119

Seeing with the Tongue?

This article published in the Daily Mail is really interesting, and the story comes, as they say, right out of left field.

Daily Mail 2nd Sept 2009

http://www.dailymail.co.uk/sciencetech/article-1210425/Blind-people-able-using-amazing-tongue-tingling-device-bypasses-eyes.html

It concerns a device that takes an electrical signal from a camera, processes it through a computer in much the same way as is done for the Argus II retinal implant, and then attempts to relay it not through the eye and optic nerve, but via the tongue.

I’ve asked for comments about this from our medical advisors and of course I will post more here or on our main website http://www.brps.org.uk as soon as I have it. Initial feedback is that the story and the science are “plausible” but that the media  may well overstate the results obtainable from such a device, which is something we’ve heard often of course.

Watch this space.

Event in East London

Having said on this blog and in other publications how important it is for us to reach people with RP in Asian communities, I’m really pleased that the OutReach Project we launched in August is working to do just that.

In some Asian communities the prevalence of RP is up to 7 times higher than in white British families, notably in Pakistani families but others too. Our membership doesn’t really reflect this and we know there is a lack of information and support for Asian people who are diagnosed.

Working with Asian people we have set up an event at the Leytonstone Centre on Wednesday 30th at 7pm. Everyone is invited, from all cultures and ethnic backgrounds. We will tell the audience a little bit about the science of RP, about our organisation, and about how they can access information and support when it is needed the most.

Professor Tony Moore from Moorfields Eye Hospital will be speaking and a number of us will be there from the charity to answer questions too.

This blog readership

After nearly two years of running the blog, and considering we had no such online presence before this, I’m really pleased with the activity. We get dozens of searches hitting the bog every day, have had over 18,000 visitors, and 144 comments on the 115 posts. From a standing start these are really interesting figures and justify us carrying on.

I guess it also means I should write here more often!

US Research “Bonus” Result

Researchers competing to be the first and best to achieve successful treatment for RP is epitomised by the two groups looking at Gene Therapy – at Moorfields Eye Hospital UK and at the University of Florida USA. We are always watching to see what comes out of the two institutions.

This month the US group reported what they referred to as a ‘bonus’ result from recent clinical trials; a female patient appears to have recovered some of her sight through the brain making connection with the treated area of the retina. See the full story linked at http://www.brps.org.uk

It sounds fascinating and promising. Also, as the Moorfields group is now treating younger patients with higher doses of the healthy LCA gene, and has been able to extend the trials by two years, it bodes really well for the next set of results to come out of London.

Not that I am at all biased …

Innovative Project at Southampton University

Professor Andrew Lotery

Great news this week when our Board approved another project grant, following on the tails of the recent grant awarded to Dr Pearson and Professor Ali.

The latest tranche of £180,000 is to go to Professor Lotery in Southampton. His idea involves trying to create photoreceptor cells from iris cells, which is different, interesting, innovative, and, if successful, could pave the way for a treatment for RP caused by any gene flaw.

The story is at
http://brps.org.uk/newsevent.php?tln=newsevents&newseventid=88.

I’m all for innovation and trying new things. We may have some failures on the way, but imagine how much a bigger failure it would be if we didn’t encourage and support new ideas, and as a result the breakthroughs we need didn’t come.

Every time we have to make a funding decision like this we have to remember that the fight against RP is a race against time for many people. Who knows, this innovative project could be one that makes a real difference.

If you are reading this blog and are not a member of RP Fighting Blindness, support us by joining, or by making a donation to the cost of this work. Visit http://www.brps.org.uk to do either.

“Deliberate” Mistake II

A hair colouring set is on its way to Stephen Goulden for spotting the reference to ‘inherited blondness’ in my last article. Note to self: must remember to proof read articles.