Look Forward
Issue 162 August 2017
Inside
Services Department
Research Updates
Anniversary Rose
Worldwide Walk
Annual Conference Success
Working Age Group Project Update
Retina International Congress
Family Funds
Staff Updates
Be My Eyes App
Exciting times ahead for RPFB
RP Fighting Blindness has enjoyed a busy and productive first half of the year, with a fantastic new look annual conference taking place, the successful Families Conference running in May and the Helpline Volunteer Training Weekend taking place last month. The charity is moving ahead with a number of exciting initiatives including the Working Age Group Project, and we’re redeveloping our services provision, more about which you can learn in this issue of Look Forward. We’ve welcomed a new member to the fundraising team at head office and have attended Sight Village events in Scotland and Birmingham. The remainder of 2017 looks set to be just as busy, and we’re excited for what lies ahead!
Letter from the Chief Executive
Tina Houlihan
I hope this latest issue of Look Forward finds you well. I’m delighted to report we’ve had a great year so far with the head office team working hard to put on events, fundraising and representing us in the sector.
I’d like to take this opportunity to thank our wonderful Helpline volunteers, who recently met in Milton Keynes to undergo their annual training; these people are
the backbone of our support services, offering guidance and advice to those affected by inherited progressive sight loss.
They are often the first port of call for those recently diagnosed and the importance of the work they do on our behalf cannot be underestimated. I met with them at this year’s training weekend and continue to be humbled by their dedication, professionalism and care for our community.
In this issue you can learn more about our research, some of the staffing changes at head office and upcoming events. We’ve committed more than ever this year to funding research and improving our services, so please do check out our website and explore the different ways you can support us.
Please do feel free to email me at ; all feedback and comments are welcome.
Thank you for your ongoing support.
Do you follow us on Facebook and Twitter? Search for RP Fighting Blindness on Facebook to find our Page and various groups, and follow us on Twitter on @RPFightingBlind for the latest updates and news about the charity.
RP Fighting Blindness funds medical research into inherited retinal dystrophies and offers a range of information and support services to patients and their families.
PO Box 350
Buckingham, MK18 1GZ
E:
T: 01280 821334 (OFFICE)
T: 0845 123 2354 (HELPLINE)
Virgin Money London Marathon
The 2017 Virgin Money London Marathon was once again a huge success with 16 runners fundraising for RP Fighting Blindness.
Every single runner finished the marathon with fantastic times; a great achievement! They were greeted at the Taj Hotel for the post-race reception by the fundraising team, friends and family, and were treated to well-deserved sports massages from Hannah Kenny from Body2Go and RPFB supporter Liz Pimperton, plus showers and a buffet. The atmosphere at the post-race reception was amazing, with everyone cheering each time another runner returned from the race.
Next year’s marathon will take place on Sunday 22nd April 2018 and we have 19 places available for next year. Join Team RP today!
The Big Half is a brand new half marathon in London organised by the creators of the Virgin Money London Marathon, and we have 45 places for Team RP runners!
It will start adjacent to Tower Bridge, follow much of the London Marathon course in reverse and finish by The Cutty Sark in Greenwich. Taking place on Sunday 4th March 2018, it also features a fantastic festival with food from around the world, music and other entertainment for the whole family to enjoy.
If you want to join Team RP for this or any of our other events, please contact Emily Webb on 01280 821334 or .
RPFB Services Department
We’re excited to announce an important change at RP Fighting Blindness. We’re reformulating our services provision, and increasing its breadth and scope following consultation with members, volunteers and other charities.
Previously our Engagement Department was responsible for service delivery, patient support and professional engagement work.
This department has now evolved into the Services Department and will retain many of its previous remits such as management of our helpline services, befriending, information, support and patient events, as well as taking on new responsibilities.
The new Services Department will be structured differently to facilitate a more regional model of working. Instead of being wholly office-based, we will be employing
Regional Development Managers spread across five different areas of the UK. This means there will be more local-to-you support and events being made available.
The key benefit of the introduction of a regional model for the provision of support services is that we will be able to actively reach more people with inherited retinal dystrophies and their families through a variety of means. This will include encouraging and facilitating peer-to-peer support more effectively than ever before, a better calendar of regional events and working more closely with the RPFB Local Group network.
Each Regional Development Manager will work closely with local and national sight loss charities in that area in order to identify and reach people with an inherited retinal dystrophy to ensure that members of the community are able to access the support they need and are appropriately signposted to other local services. We believe we will be able to reach out to those living across the UK much more effectively with this new model.
This new department is being initially headed up by Antony Moore, who has a wealth of service provision and community support experience. Antony is joining the organisation in early September and will be coming from the National Deaf Children's Society, where he is currently employed as Head of Children & Families Support Services. Denise Rawden has been promoted to Volunteer Development Manager and will be working closely with Antony as the new department takes shape. We will be looking to recruit our first Regional Development Manager in the coming months, and then will employ a rolling programme to complete the new model.
We anticipate this new regional model taking time and effort to complete and establish. This is an exciting and completely fresh approach for the organisation to take, but one which we feel is essential to grow our patient support offering. We’re looking forward to working with our partner organisations more and more over the coming years and improving how we offer our services and support to you.
Helpline Training Weekend
July saw our dedicated RP Helpline volunteers come together for our annual Helpline Volunteer Training Weekend at Kents Hill Training & Conference Centre in Milton Keynes.
The weekend is important for the Helpline volunteers as it provides an opportunity to learn new skills, review best practices and to learn from our guest speakers. This year we heard from Judith Potts from Esme’s Umbrella about Charles Bonnet Syndrome; Fiona Powell joined us from RNIB Eye Health
Team to talk about various conditions that fall under our umbrella, and Dr Stephen Hicks presented updates about his Smart Glasses technology.
The team were also joined over the weekend by Tina Houlihan, RPFB’s CEO who took the opportunity to update the volunteers about the latest developments at the charity.
Emma Hughes, Deputy CEO, Deborah Laing, our Senior Fundraising Manager and Clair Pudaruth, our Administrative Assistant joined the team to help over the weekend as well as Thomas O’Neill, our Communications & PR Manager.
The weekend is also an important opportunity for the team to get together and support each other; a great deal of learning happens over dinner and a glass of wine, when the team gets a chance to share experiences and socialise. The weekend was a great success and we’d like to say a big thank you to all of our Helpline volunteers; without their hard work and dedication, we would be unable to offer this unique and valuable service.
New Research Projects
Following our Innovation Fund Appeal, we’re excited to announce that the RP Fighting Blindness Board of Trustees has chosen three new research projects to fund.
Their decision was particularly difficult this year, as all of the shortlisted projects featured internationally competitive research. Finally, after much deliberation, the following projects were chosen:
Identification and functional characterisation of the missing ABCA4 variants in Stargardt disease
ABCA4 mutations affect the majority of people with recessive Stargardt disease and about 30% of those with con-rod dystrophy. This project aims to develop a cost effective sequencing method for the entire ABCA4 gene, sequence 1,000 Stargardt’s cases worldwide and finalise a process for testing the effects of mutations. Ultimately
the diagnosis of people with an ABCA4 mutation will be improved, and the identification of those suitable for participation in future clinical trials made easier.
Modelling effects of TIMP-3 mutations in RPE - insights into Sorsby Fundus dystrophy and night blindness in retinal dystrophies
This project aims to explore how changes in a protein called TIMP-3
damage the retinal pigment epithelium (RPE), leading to Sorsby Fundus dystrophy. The team will also look at whether gene editing technology might be a viable treatment for the condition.
Non-viral gene therapy using S/MAR vectors for Usher syndrome.
This project explores an alternative to traditional gene therapy, which may have implications for a wide range of inherited retinal dystrophies, not just Usher syndrome. S/MAR vectors have the capacity to hold much larger genes, and they have no viral components. The team will explore whether this new approach represents a safe and effective future treatment option.
We need your help!
We’re so excited about each and every one of these projects, and we look forward to bringing you updates as the teams start work. Those of you who donated to our Innovation Fund have already made an important contribution, but we need to continue raising money to deliver this new and ground breaking research.
A number of fundraising activities in the coming months will be raising funds for these projects, so look out for these and please give generously if you can.
For example, the Big Give Christmas Challenge launches on #GivingTuesday (28th November) and continues for one week. During that week we will be raising funds for the Usher syndrome non-viral gene therapy project, and every donation you give will be doubled, meaning you can make a huge difference.
If you would like more information about the Big Give Christmas Challenge or can help us spread the word about this campaign please contact Deborah on 01280 821334 or email Runners in this year’s Oxford Half Marathon will also be raising funds for these exciting projects!
Paid for announcement by Second Sight
NHS England has announced that it is to evaluate 10 British patients who will be implanted with the Argus® II Retinal Prosthesis System, following their progress for a year, measuring quality of life improvements experienced by the patients.
Surgeries will take place at Moorfields Eye Hospital in London by Prof. Lyndon Da Cruz and at Manchester Royal Eye Hospital with the surgeon there being Prof. Paulo Stanga.
Once the evaluation has been completed, NHS England will decide whether to routinely pay for this artificial vision treatment for patients who have lost a significant amount of sight due to RP.
If you or a family member would like to consider contributing as a patient candidate for the evaluation, please call UK freephone 0800 520 0925 for more information.
This advertisement is paid for by the company and its inclusion in this newsletter does not imply any preferential endorsement by RP Fighting Blindness.
RP Fighting Blindness Anniversary Rose
As many of you will be aware, RP Fighting Blindness was honoured last year by the British Isles Rose Society, which bred a new rose to mark our 40th anniversary. We’re delighted to announce that the rose, named A Vision of Hope, is now available for sale from R V Roger of Pickering. You can order them online by visiting http://www.rvroger.co.uk/ or by calling 01751 472226.
The rose is a deep pink with yellow hues. Each rose sold will benefit RP Fighting Blindness, with two pounds of each sale being donated to us.
We’d like to say a personal thank you to David Wilce, Chairman of the British Isles Rose Society, who has been instrumental in this wonderful tribute to our charity.
RPFB Treks
West Highland Way - 20th-26th August
On 20th August 2017, a group of 11 trekkers embarked on the West Highland Way trek for RP Fighting Blindness. The group of adventurers took on 96 miles of trekking through fantastic scenery over six days. The group was made up of a mixture of fully sighted and visually impaired people. We’ll report more about this great trek in the next issue of Look Forward!
2018 Trek
Our plans for the 2018 trek are well underway, and after an online poll and votes at the Annual Conference, the destination has been narrowed down to two options: Mont Blanc and Transylvania. Below are more details on each. If you are interested in either of these treks please let us know! Contact Emily on 01280 821334 or