Well, rather a nice lunch and coffee, but some good work done yesterday planning how we might move forward with our RP Young Professionals group.

I’m delighted that Rachael Stevens is back helping us after taking some time out, congratulations are due on the birth of Joe and both were looking fine.

RP Young Professionals (RPYP) is important to us and we are keen to create a good quality summer event and also create an opportunity for people to get involved in one of our fundraising events later in the year as well. As most of the group is London based, plans are now afoot to hold a meeting at the Head Office of the Press Association, which should be really interesting as well as being convenient and accessible. A date is to be agreed, likely to be late July, and a mailing to everyone on the RPYP mailing list will follow shortly afterwards.

Another possibility is that the group will get involved in and support our participation in The Carrots Walk in September. This is a night walk around London (and other cities) and the sponsorship we raise will be matched pound for pound by Fight For Sight in a jointly funded RP research grant.

RPYP is open to anyone who would like to get together occasionally at social or networking events and get to know other people with RP. The age range and the occupations of people taking part so far is very diverse. At the moment most activity is in London but if people are interested in organising an event in another location we would love to hear from you.

David Head
Chief Executive

Last week, Sue Drew, Denise Rawden and I were privileged to be invited to Professor Alison Hardcastle and Professor Mike Cheetham’s lab at the Institute of Ophthalmology in London.

We spent the morning learning about the lab’s facilities and technology, plus were shown the fascinating techniques used by the team during their research experiments.

We really were able to appreciate that the team were “working with the invisible” when we were shown slides under the microscope of cell research. Afterwards, we were invited to the department office and discussed the ways in which RP Fighting Blindness has contributed to the research team, and how research is progressing.

We were made to feel really welcome by the whole team at the lab, and found the experience a very interesting one. RP Fighting Blindness is keen to maintain good working relationships with all our research teams and we were thrilled to be invited by Alison and Mike. We’ll of course keep you updated with all future visits and let you know how we get on!

Thomas O’Neill
Communications Officer

Yesterday (2nd May) our Outreach Officer  Sue Drew, Trustee Roger Backhouse and myself attended an important meeting. This was the final priority-setting workshop for the Fight For Sight / James Lind project to establish 10 top research priorities for inherited retinal dystrophies.

In this context, inherited retinal dystrophy means RP and associated conditions, including Stargardt’s, Choroideremia, RP syndromes such as Usher, and so on.

This was a fascinating meeting involving 24 people (plus facilitators) including patients, care workers, parents, clinicians, researchers, and ourselves and Fight For Sight. The idea was to produce a “top ten” of research priority questions, which can in future be used when approaching funders, or when assessing grant applications, or determining strategy, or lobbying for government money, and so on.

This wasn’t the beginning though; this was entering the final phase of a process that started early in 2012, and has been through a process that initiated and then assessed and then filtered over 4,400 questions from an open survey and invitation to contribute. Our regular visitors may remember being invited to take part.

During a long day of sometimes difficult and potentially contentious discussions, our expert facilitator eventually managed to get us to combine, reword, discard, discuss, argue over, and eventually settle on our top ten. The meeting had started with 30 so this was no mean feat. These will now be written up, together with some narrative, and bounced back to the group for final agreement.

This is a very important piece of work and it was crucial that we were involved and were representing what we believe to be the views of our many supporters who are affected by retinal dystrophy. Thanks to those that contributed and we are looking forward to producing and announcing the final document soon.

David Head
Chief Executive

Last week I was invited to a Specialist Workers meeting in South Wales to talk about RP, the work of the charity and my outreach role.

These types of events are always beneficial, as they allow us to reach sensory support teams and health care professionals who work with people affected by RP, providing practical ongoing support.  Reaching these groups not only informs their work, but raises awareness of our services to the most important people of all, those people affected by RP.

Some 30 plus people attended the meeting. I provided RPFB information packs to those in attendance, containing leaflets, helpline cards and, DVD.  The hope is that this will allow our information to be disseminated even further.

As a result of this meeting in Cardiff, I have been invited by the South Wales ECLO Manager to attend the ECLO networking group in July to give a talk about our work.

In Wales and Northern Ireland, unlike England and Scotland, every eye clinic is lucky enough to have an Eye Clinic Liaison Officer (ECLO).  ECLOs are an essential point of contact for us within hospitals, as they provide emotional and practical support both to those who are newly diagnosed and those who are well perhaps already well-established on their RP journey, but will still seek support or advice at the hospital from time to time.

Networking really is essential to the work of the charity. Every time we get out and talk about what we do, about how important the charity is for those with RP and the essential information and support services we provide, we are raising our profile, gaining influence and reaching out to people who may need our help.

Sue Drew
Outreach Officer

I recently attended and shared information at a sensory day held at Thurrock Adult Community College. It was for anyone with a sensory impairment and was designed to include the very best information for those who are profoundly deaf, hard of hearing, living with sight loss or registered as partially or severely sight impaired.

Exhibitors covered technology, mobility and orientation, employment, leisure and education.  Many organisations were represented, including RPFB, Guide Dogs, RNIB, Macular Society, Diabetes UK, Tinnitus UK, Deafblind UK, Sense, Essex Fire and Rescue, Action on hearing loss and many, many more, including the Action for Blind People bus.

There was a Rehabilitation Worker at the event, with a low vision display, where people were able to find out more about resources available to them in the low vision clinics and could test out all sorts of useful aids.  There were free health checks available on the day, including checks for cholesterol and blood pressure and representation from the local hospital audiology department.

It was a very informative and busy day.  I met a number of people affected by RP, and I was able to share knowledge and information with other organisations and health care professionals working with people with RP.

As a direct result of this event, RPFB will have an outreach presence at another exciting ‘exhibition-style’ event in Dagenham.

The Eye Health event will take place on Thursday 13 June 10.00am – 3.00pm at the Becontree Leisure Centre, Dagenham. If you would like further information, please contact the office.

Sue Drew
Outreach Officer

Today I was asked to speak at the Laurence-Moon-Bardt-Beidl Syndrome conference in Northampton, taking a series of 3 workshops in which I presented a little about our work trying to find a cure for RP, and then answered some questions.

LMBBS is a syndrome that brings with it RP, as well as other issues such as kidney problems, learning difficulties and problems with weight. RP was the focus of my talks, but we are very familiar with LMBBS as one of several forms of syndromic RP.

It was a friendly, well organised and informative event, in a great venue suitable for people with visual impairment. Chris Humphreys the organiser had done a great job and my sessions were full – in fact we could have done with more time to answer all the questions!

We are pleased to support the LMBBS Society and look forward to the chance to take part in events again in the future.

David Head
Chief Executive

Next month I will be attending the Fight For Sight Priority Setting Partnership meeting in London, helping to determine a set of research priorities in respect of inherited retinal dystrophies – an umbrella term that incorporates retinitis pigmentosa of course. Later, our aspiration is that this set of priorities wil inform research teams, funders, and other organisations that influence the direction of eye research.

As part of this process I’ve been asked to select a “top ten” research priorities – what the partnership are calling “areas of uncertainty” from their long list of 63. This doesn’t mean that our top ten will become the priorities, but obviously as an organisation we want to influence this type of decision.

You can help by having a look at the long list of 63 and emailing me with your top ten. This is an opportunity to have your input. Unfortunately it’s quite short notice, as I will need your selections by 9am on Monday 22nd April.

Just email me the numbers of your top ten from the list (which can be downloaded here >> Inherited Ret Dyst Long list of questions.

This should be sent to david@rpfightingblindness.org.uk.

Thanks for your help.

David Head
Chief Executive

It’s been busy at the RP Fighting Blindness office recently, and last weekend saw myself, David Head, Denise Rawden and Sue Drew attend the Retinal Awareness (RAG) weekend in Blackpool. The three day long event was well attended by members from the north of the UK and beyond, and as usual a range of great speakers had been arranged.

A range of fascinating talks were laid on, from Guiding Skills with Guide Dogs for the Blind Association to mountaineering holidays. A personal shopper from Debenhams came and explained how her services could be valuable to those sight-impaired, and a speaker from Action for Blind People explained about Personal Independence Payment and other benefit changes due to take effect in the near future.

David Head, Prof Alison Hardcastle, Mr. Martin McKibbin and Prof Mike Cheetham answered questions from the floor in a question and answer session towards the end of the weekend so attendees could learn about the very latest advances being made in sight loss research.

Evening activities of quizzes and dancing, plus great food meant everyone had a wonderful time and were able to connect with other members in a laid back environment.

We look forward to next year’s RAG weekend and hope to see you there!

Thomas O’Neill
Communications Officer

Yesterday Hannah Hickman, Denise Rawden and I attended Optrafair 2013 at the NEC in Birmingham. Optrafair is the UK’s largest optical trade event and is attended by many working in the industry to gain updates, information and contacts in the optical sector. RP Fighting Blindness was keen to attend this year to scope out potential fundraising opportunities and learn about some of the latest developments in ophthalmologic care.

Exhibitors included lenses and glasses frames manufacturers, pharmaceutical companies, healthcare providers and other sight related charities. A number of fascinating educational seminars were held throughout the day and the team felt they had learned a lot by its conclusion.

Held bi-annually, the office team are looking forward to attending Optrafair 2015!

Thomas O’Neill
Communications Officer

I really enjoyed – was privileged in fact – attending a concert yesterday given by Castell Coch Choral Society. The society has chosen RP Fighting Blindness as one of two charities to benefit from their concerts this year and it was important to me that we were there for the first to express our thanks and show our support.

What a great performance. I’m not an expert by any means on choral music, but I was very impressed with a beautiful rich sound and amazed how much more is involved, technically, than I realised with this type of music.

The society has been fundraising for a few years now and chooses two charities each year to benefit from the proceeds of four concerts. They’ve raised a total of over £50,000 so far over the years which is fantastic by any standards.

The reason we were chosen is that we were nominated by one of the choristers who has RP herself. This personal link makes the support we are getting from the group even more special.

Being Easter the programme included “Behold The King” and “The Easter Hymn”. Very atmospheric, brilliantly performed and held the audience gripped.

Attending fundraising events is a tough job, but somebody has to do it!!

http://www.youtube.com/watch?v=hWVCx_0juN0 is worth listening to, though this was from a different performance.

David Head
Chief Executive