The RP Hike – March

Posted on March 3, 2012 by RP Fighting Blindness

Malvern hills walkersWith the amazingly challenging RP Coast to Coast walk coming up in August, time to start getting fit, after all I have to trek nearly 200 miles in 10 days.

Introducing then the RP Hikes, a series of one day hikes for training for the C2C walkers, and an opportunity for other people to get involved, walk with us, see some of the UK’s most beautiful countryside, and show support for the C2C team.

The first hike, on Saturday 3rd March, took us the length of the Malvern Hills and back. An undulating 6 hours walking (with a pub lunch) which took in weather from bright sunshine through to even a few minutes of sleet. Great fun though, aching legs for everyone but a great spirit.

Our next walk is in Wales, the fantastic Pen-y-fan on Saturday 7th April. Email me at david@rpfightingblindness.org.uk if you would like to take part. sighted, partially sighted, or blind, everyone is welcome.

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RP and Young People

Posted on February 18, 2012 by RP Fighting Blindness

RP affects young people – it’s one of the largest causes of sight loss in children and in people of working age. We have indeed found it difficult to engage with this group in the past but the age profile of RP Fighting Blindness supporters and activists is changing. No where recently has this been more exemplified than at a reception for young people with RP in London this week, organised by our RPYP group and attended by over 60 people. What a fantastic positive bunch too, and some inspiring speakers.

At the packed-out event in Mayfair they delivered a highly successful and positive reception. The event was designed to bring together people who are interested in helping the charity engage more and more with people of working age, to discuss their needs and to look at how RPYP could address these.

This it did in spades;and heard from a panel of interesting and inspirational people who had made a success of their careers having lost or whilst losing their sight. Presentations from the charity “Blind in Business”, from RP Fighting Blindness, and from the individual successful speakers were all well received. However the most important outcome for me from the meeting was the dialogue with the delegates. A formal Q&A session quickly morphed into a healthy, positive dialogue about work life with RP; there was lots of mutual support, and plenty of offers to get involved in the planning and delivery of future events.

This was an outstanding event and a real privilege to have attended. In particular, Rachael Stevens and Yvette Chivers, who organised everything, deserve our thanks.

Graham Drew, who chairs the RPYP committee said during his presentation how he believed mutual support from understanding people faced with sight loss can be so much more important and meaningful than formal counselling and external services, valuable as they are. He expressed a hope and aspiration for RPYP to grow and provide just this to people of working age. I’m sure it will.

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AMRC Research Shows support for NHS Research Programme

Posted on June 11, 2011 by RP Fighting Blindness

NHS website banner, many different faces

A recent communication from the Association of Medical Research Charities is quite heartening, especially in these ‘times of austerity’. It’s good to know that there is still a general understanding and agreement that medical science cannot be allowed to stand still even in the most difficult of time.

The AMRC report as follows:

We did some MORI polling to gauge public support for the NHS to do research and the results are amazing – they should be very useful to support our work as the Health & Social Care Bill goes forward …

92% of the public think it’s important for the NHS to support research into new treatments funded by charities.

To support our recommendations to build research into the health system, we conducted a MORI poll to get some numbers on public support for health research in the NHS. A whopping 97% of the public believed that it is important for the NHS to support research into new treatments.

Background

Last week we sent a submission to the NHS Future Forum, making recommendations for how research should be built into the health system. http://www.amrc.org.uk/news_2011_building-research-into-the-structure-of-the-nhs

Today we have published an Ipsos MORI poll – commissioned by AMRC, Breast Cancer Campaign and the British Heart Foundation – which got some numbers on public support for research in the NHS and also explored how involved people want to be themselves in research.

What did we find?

97% of the public think it’s important for the NHS to support research into new treatments 92% think it’s important for the NHS to support such research funded by charities
93% of people want their local NHS to be encouraged or required to support research
72% would like to be offered opportunities to be involved in trials of new medicines or treatments if they suffered from a health condition that affects their day-to-day life.
80% would like to consider allowing a researcher confidential access to their medical records.
88% would be happy to be asked to talk to researchers about their family history or give a sample of their blood to be tested in a laboratory

Detailed results are online at http://www.amrc.org.uk/news_2011_uk-public-want-nhs-to-support-research

What now?

The NHS Future Forum is expected to report early next week and it appears that we will hear back from the government very soon after that outlining changes they plan to make to the reforms of the health bill. We are going to keep making noise about research, we will be preparing to brief parliamentarians as the bill starts going through the House again. We will be using these results to support our work.

END

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More Learning … Health Technology Assessments

Posted on June 9, 2011 by RP Fighting Blindness

Thanks to sponsorship (from several pharma companies) RP Fighting Blindness is learning again. I am on a course at the London School of Economics (LSE) covering the subject of Health Technology Assessments (HTAs).

Hospital wardThis is basically the method by which NICE assess treatments and devices for use by the NHS, so as we move closer to treatments it is so important that we understand them. As I write in a previous post, we HAVE to understand this increasingly complex environment and raise our profile with the organisations and people involved if we are to stand any chance of influencing future decisions about NHS funding for RP treatments.

>> more at http://www.hta.ac.uk/ about HTAs.

This first day has really stimulated the brain cells with questions about putting a value in increases in quality of life, balancing the rights and wrongs of funding one treatment over another when resources are limited, and looking at the changing healthcare environment in the UK and beyond.

We are all living longer, and that’s generally regarded as a good thing. But every year our average lifespans are extended includes several months affected by a degenerative condition. These include retinal degeneration as well as the obvious other dystrophies. Budgets are under pressure, the population is aging, carers are more scarce, there are more demands on all public sector budgets.  It’s a challenging environment for patients to be making their case, we have to be prepared and be professional to succeed.

 

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“Stem cell ‘bust’” … New Scientist

Posted on May 30, 2011 by RP Fighting Blindness

Test tubesResearch has its ups and down as we all know. This week New Scientist magazine reported on work in the USA that puts the potential of stem cells derived from a patients own skin into doubt due to rejection of tissue generated in this way.

I’ve written so often on our website and on this blog about great advances and “cautious optimism”. These results and this report just underline the importance of maintaining the balance don’t you think?

See http://www.brps.org.uk/newsevent.php?tln=newsevents&newseventid=218

 

 

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Further Investment in Gene Therapy Research

Posted on May 8, 2011 by RP Fighting Blindness

Regenx logoOur news item at http://www.brps.org.uk/newsevent.php?tln=newsevents&newseventid=212 tells of a significant grant in the US for the pharma company REGENX to develop their gene therapy work, specifically with a focus on the technology used to deliver good copies of faulty genes to retinal cells.

This is exciting for us for a couple of reasons. Firstly because it further vidicates early investment by our own trustees in this line of research, and secondly (of course) because every time an investment like this is made – $2.8m in this case – a treatment becomes that bit closer.

Prof. Robin Ali from the Institute of Ophthalmology in London said earlier this year that he believed that there would be a number of announcements this year and next that would vindicate investment in gene therapy as a treatment for RP, let us hope that this is the first of many.

(Prof. Ali’s speech on this isse is available to download from http://tinyurl.com/5rtrps5)

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Merlin Helps with RP Fundraising

Posted on May 4, 2011 by RP Fighting Blindness

Merlin raised money for RP Fighting BlindnessWith apologies to our VI readers.
Who is this masked wizard?
Click for full-size image.

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Optogenetics – Promising Results from MIT

Posted on May 3, 2011 by RP Fighting Blindness

Optogenetics – the process of inducung light sensitivity in alternative retinal cells to replace the function of degenerated photoreceptor cells – is offering great hope after scientists at MIT announced successful research in mice with retinitis pigmentosa (RP).

See http://www.brps.org.uk/newsevent.php?tln=newsevents&newseventid=207 for the full story.

Once again of course we have to caution against overoptimism, especially over timescales from animal treatment to human clinical trials. Nevertheless the progress in yet another exciting field of RP research has got to be welcomed. Our congratulations go to the team at MIT.

We can now point to prospects from retinal implants, optogentics, gene therapy, stem cell research, the use of growth factors, the use of anti-oxidants, and more, to ultimately provide a cure or treatment – possibly even a range of cures and treatments – for RP.

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Volunteering and “The Big Society”

Posted on April 19, 2011 by RP Fighting Blindness

We found this cartoon in “Third Sector” magazine quite amusing. Whatever your political views on The Big Society idea, we all in the charity sector know how hard it is to recruit volunteers to organise and run things ….

Cartoon satirising The Big Society

Click for larger image

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Prof. Robin Ali Speaks on Gene and Stem Cell Therapies

Posted on April 18, 2011 by RP Fighting Blindness

Prof Robin AliOn Saturday 2nd April Prof. Robin Ali (pictured) from the Institute of Ophthalmology addressed a group of about 120 RP Fighting Blindness members, speaking at length about both gene therapy and stem cell therapy, two lines of work in which he is heavily involved.

In an optimistic, frank, and well delivered session Robin explained the background to both therapies, and outlined the progress made by his and other research teams to date. He also gave a taste of news to come.

The group were priveleged to hear from one of our most eminent researchers. A recording of Robin’s presentation is available to download (for a small donation) at http://tinyurl.com/5rtrps5

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