Thoughts on the Members’ Conference 2009

Last Saturday (20/6) saw our 33rd Members’ Conference being held at the Millennium Stadium in Cardiff. This was reported on our official website at http://www.brps.org.uk/newsevent.php?tln=newsevents&newseventid=82.

The audio recordings of the four sessions of the event have been posted on this blog already (see previous article), so you can listen in at any time. You can also get a 3-CD version from the office (01280 821334) but as it takes time, the discs, postage and packing to get these to you, if you do request them please consider making a donation from our main website, we suggest £5 but this is entirely up to you.

A couple of comments from me on each session … …

The first session was our formal AGM, the ‘business’ section of the day. Members present were very supportive of the Trustees plans to grow the organisation by taking on more staff and increasing income over the next few years, and also readily approved the Annual Report & Accounts for last year. I was pleased on a personal level to also receive great support for the changes we are trying to make, as we modernise the charity step by step.

The second slot saw the launch of our new patient information film on DVD. We had a 20 minute version of the film, which has been produced by a team at Channel 4, and they’ve made a fantastic job. Several members in the audience were quite emotional following the film, which explores most of the main issues faced by people with RP such as employment issues, driving, family planning, fears, mobility, day to day living, and much more. The full 50 minute version is still being finalised, but we expect to be able to distribute it very shortly.

Thirdly the meeting was addressed by Sarah Rochira, of RNIB Wales, who outlined her organisation’s work to ensure that people with visual impairments secure all the benefits they are entitled to. This was very interesting, I think many in the audience were shocked at the millions of pounds that goes unclaimed by VIPs and impressed at the ambitions plans of RNIB Wales to address the issue.

Finally the meeting heard from Dr Lyndon Da Cruz and was able to ask medical questions of him and Professor John Marshall. Dr DaCruz is involved in the clinical trials of retinal implants taking place in this country, and others, at the moment and was able to bring us all up to date with progress. We also heard from one of his patients – John Thomas – who had the implant placed into his right eye several months ago and is more mobile as a result. Again, this presentation is available by audio at this previous article.

Overall the meeting was very positive indeed, with several people telling us it was “the best AGM for several years” and “the ideal venue”, which is very gratifying of course. I think the only complaint was that the room got a bit warm, perhaps we caught the Welsh summer!

If you were at the meeting, thank you for attending and for your support for our work. If you weren’t, make sure you can get to the 2010 event at Euston in London, on June 19th.

Recordings of the Members’ Conference

Here are the audio recordings of the four sessions of the 20th June Members’ Conference held in Cardiff.  These files are “streaming”, which means they are not downloaded to your machine. If there is demand from several people for the files at the same time this may lead to interruptions in the audio, in which case just try again later.

A CD version is available from the office on request. If you request a CD copy we would be very grateful if you could make an (entirely optional) donation at our main website www.brps.org.uk to help cover the cost, which is about £5. Thank you.

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Session 1, the AGM
Chaired by Roger Green
Approx 44 minutes

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Session 2, the launch of our new DVD
Presented by David Head
Approx 8 minutes

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Session 3, “Welfare Rights”
Presentation by Sarah Rochira of RNIB Cymru
Approx 58 minutes

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Session 4, Dr Lyndon Da Cruz, Moorfields Eye Hospital
Facilitated by Prof John Marshall
Approx 68 minutes

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Neurotech Results: Progress or not?

As reported on our main website at ( see this story ) the US company Neurotech has announced the latest results from clinical trials. They have been trialing the delivery of a growth factor (CNTF) using their NT-501 encapsulated cell technology in patients with RP (and in AMD patients as announced earlier this year), in an effort to demonstrate that they can arrest the degeneration of photoreceptor cell in the retina.

Well, results are in, and you can read the full Neurotech press release at the link above, so I’m not going to duplicate it here.

The good news is that the technology appears to work and appears to be safe. The company report positive “biological effects” and a thickening of the retina in the treated eye as compared with the untreated one.  Coupled with the positive results in AMD patients it is reassuring to know that progress is being made in terms of the technology needed to deliver CNTF to the retina effectively and safely.

The not-so-good news is that over the 12 months of the trial, no patients saw improvement in visual function. However the company claim to be optimistic that this will change over time and that 12 months is a relatively short period in RP terms, and this is true to be fair. However there will be disappointment both at Neurotech, I’m sure, and amongst people with RP in the USA and around the world, including our members.

The fight to find a treatment – to preserve any sight remaining for anyone with RP – is rightly a high priority for us, similar organisations around the world, and commercial companies with an interest in developing the technologies we need. We are as keen to see this happen as we are to see an outright cure from gene therapy, stem cell therapy, retinal implants, or other innovative approaches.

Once again we are reminded of the need to temper our optimism and excitement at clinical trials taking place around the world using various therapies to treat RP, with caution about the timescales involved in. For me, this is a key lesson again.

Jordan Puts My 100km in Perspective!

Amazing, I thought walking 100km in the Sahara over a few days was an achievement, but Jordan Summers is trekking 2,650 miles across the USA to raise funds for us.  He was inspired by his friend Leanne who has RP, and being a keen hiker was anxious to do something special for her.

Well this mammoth trek is certainly that, all the way from the Mexican to the Canadian borders of the USA along the infamous Pacific Crest Trail. I stand in awe at this trek,

The story is at www.longwalk.org.uk , but Jordan also has his own website at http://www.summers-trails.com/

Amazing!

Recruitment Again

As I’ve reported previously on this blog, recruiting people is a great part of my job but very time consuming. In fact, coupled with a few days holiday, it’s the main reason that I haven’t had as much chance as I should until now to update this blog.

Nevertheless, good progress has been made. We have recruited a new Database Coordinator (replacing Barry who leaves at the end of May), and we have recruited into the new post funded by the John Ellerman Foundation (see earlier article), that of our first Outreach Officer.

http://www.brps.org.uk/newsevent.php?tln=newsevents&newseventid=79

Many members and readers of this blog will know Sue Drew, she has been helping us in a volunteer role for some time running our Cambridge branch with her husband Glenn. Sue has a son with RP and bring a level of knowledge and commitment to the post it would have been difficult to find in someone completely new to the charity.

As I’m sure she will testify, we still put her through a stiff interview and worked hard to make sure she wasn’t unduly advantaged or disadvantaged by the fact that we knew her, for example we made sure that the interview panel included a Trustee who didn’t know Sue, and that we worked with a standard set of questions for all the candidates.

We had a good number of candidates too, which was gratifying. I guess that reflects the current economic times to some extent as a number were straight from University or had been made redundant from other posts. It put us in a good situation being able to choose interviewees from a wide range of applicants.

I’m sure members will join me in wishing Sue and the Outreach Project well, keep checking in here for updates of course.

Blogging Will Resume Shortly

With apologies to everyone that reds this blog, and I known there are quite a few of you, the CEOs blog will be back live in mid May. In the meantime news items will still be updated on the main RP Fighting Blindness website at www.brps.org.uk.

Outreach Project Funded for a Year

We had some good news last week. We had confirmation of a grant from The John Ellerman Foundation to fund an Outreach Worker for at least 12 months, allowing us to launch our planned outreach project.

Outreach always sounds so cliched doesn’t it? However, the truth of the matter is that we have about 3,000 people on our database, but we know that 20-25,000 people are affected by retinitis pigmentosa across the United Kingdom. We do a lot of things right in providing information and support through our helpline and other services, but we obviously aren’t reaching as many people as we should be.

This is true of several groups of people; Asian people (who are particularly prone to developing RP), people who have just been diagnosed (and need information and perhaps emotional support), people in rural areas (who have difficulty accessing all health services), and younger people with RP (with whom we seem to have perpetual difficulty engaging).

So now we can plan information events up and down the country, produce more materials, work with other charities and agencies, and attract attention to our services and our cause. This will lead to us helping more people, attracting more members, becoming even more representative, and becoming more influential.

We’ve started recruiting straight away … and as we make progress  I’ll add further items on this blog and of course on our main site.

>> Recruitment link <<

Branch Chairs Support Growth Plans

An excellent venue, BVSC Birmingham

On Saturday 4th April our Branch Chairmen and Chairwomen met. The venue, BVSC in Birmingham, was excellent and conducive to a really positive meeting.

One of the main topics for discussion was the future of the organisation. Trustees want to approve a new 5 year plan (the current 5 year plan runs until the end of 2009) and it was important that the Branches, and thus the members of the charity, approve the basic principles for the way forward.

Our idea is, in summary, to continue to invest for growth. Increasingly we are proving that investing in staff and resources to (1) raise money for research and (2) deliver services, is the only way that we are going to grow large enough and quickly enough to remain influential. Regular readers of this blog will already know my views on this. 

So I was delighted that the meeting unanimously endorsed proposed principles of investing for growth, of maintaining charitable expenditure at a minimum of 70% of income, of continuing to ringfence branch generated research funds, of paying professional fundraising staff, of outreach work and expanding awareness of RP and the charity, and of the Trustees setting income targets which will trigger various stages of the growth plan.

I am hoping that the Trustees will agree the plan at their next meeting, and the members’ endorsement of these principles will certainly be encouraging.

Outreach in London (Ilford)

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.

RP Fighting Blindness in Scotland

 

This weekend two colleagues and myself travelled to Edinburgh to meet members of our two Scottish Branches (East Scotland, based in the capital, and West Scotland, based in Glasgow).

It was a long trip but well worth it. A good number of members from both branches turned up and proved to be very positive about the recent developments within the organisation and our plans for the future.

We also discussed our plans to ask the Big Lottery Fund to fund a new research project based at Edinburgh University. Naturally members were keen that we attract funds for any RP project, but this one is particularly interesting as it focuses on prevention of retinal degeneration and is not gene-specific. Hopefully we will be able to make more announcements about the project soon.

The group were very welcoming and had lots of questions for us, which led to healthy discussion about a whole host of issues. 

Edinburgh is a beautiful city too, though we didn’t get to see a lot of it (we were working … honestly). I hope to go back again soon and perhaps make a full weekend of it and tour the castle and so on.

Overall a very positive branch meeting with some very supportive members. My thanks to the local Chairs Jim McLean and Lynn Barr for their hospitality.