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The RP Fighting Blindness Families Conference

RP Fighting Blindness Charity held its first Families Conference earlier this month which saw around 30 families come together to meet others who have similar Retinal Dystrophies all going through the same situations.

Guest speakers shared their knowledge on the latest research, genetic counselling, support services available to both adults and children affected, as well as inspirational stories from those living with RP but have gone on to achieve their ambitions and not let their vision impairment hold them back. The members who attended were able to spend time with each other during the weekend and so did the children over activities that were planned for them. The workshops on offer for all to participate in provided additional sources of support and information.

As an ambassador for RP Fighting Blindness, I was invited to speak about my experience of living with RP. From a shocking diagnosis, moving to London, bringing up children, and then finally getting the support I desperately needed, I finally accepted and came to terms with my sight loss. I found ways I could relive my life; from volunteering, setting up a social group, organising charity fundraisers and now working for East London Vision.

“Was I nervous presenting at my first public speaking event? – most definitely. Would I do it again? – yes indeed.” I had learned that the biggest help and support I received was from another vision impaired professional who knew exactly what I was going through and how I felt. In fact, this is exactly what people said to me about my talk and how they could all relate.

Attending as a delegate was very useful, not only for me but for my family as well. My daughters met other children with vision impaired parents and children who were affected with sight loss too. It was a great opportunity for them to share their feelings over fun activity sessions and during times of socialising. Equally, my husband met other partners in the same situation and it was certainly a great bonding time for them. Moreover, I felt that my parents, who attended their first RP information day ever, found it extremely useful and engaging by talking to other parents and seeing how other people with RP cope and manage in different ways.

Overall, it was a fantastically organised weekend and very much-needed. It was a privilege to have been asked to speak at the event but at the same time thrilled to have been part of it; gaining and sharing lots of information, and connecting with others. One aspect which I can take away from the weekend, and would love to share with others is – please talk about your emotional journey, whether it be to a family, friend or professional, as there is always someone who can help and you do not have to go through it alone.

If would like to listen to my talk at the RP conference please click on the YouTube video above.

Bhavini Makwana
RP Fighting Blindness Ambassador

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Sight Village Scotland

Last week I was in Scotland with Denise Rawden, Engagement Officer, for the annual Sight Village Scotland events.

Sight Village is an important part of our engagement remit, as it allows us to directly interact with the VI community, speak with other partner charities in the sector and learn about the latest mobility aids and technology. Sight Village Scotland was held over two consecutive days in Edinburgh and Glasgow.

The event consists of a large exhibition for visually impaired people, their families and various health and care professionals, which attracts exhibitors from across the world, including charities such as ours, manufactures of low vision aids and technologies, professionals, business people and many more besides.

When we exhibit at events like Sight Village, we take our leaflets, magazines, posters, DVDs and various other resources and promote the charity’s work to those who may not be familiar with us, or may not realise their condition falls under our umbrella. An important part of this is making patients aware we’re here for them, and that they belong to our umbrella of conditions, and to inform healthcare professionals about our services so they can refer people to us as early as possible.

It was a great few days and we were delighted to meet so many people. Thanks must go to Queen Alexandra College for organising this and the other regional Sight Village events. We also plan to be at the Birmingham and London events later in the year, so if you’re local do pop in and see us!

Thomas O’Neill
Communications & PR Manager

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Virgin Money London Marathon & Expo

The 2017 Virgin Money London Marathon was once again a huge success with 16 runners representing and fundraising for RP Fighting Blindness.

This year there was a big lead up to the main event as we had a stand at the Virgin Money London Marathon Expo at the Excel, London. The exhibition attracted nearly 80,000 people over the course of four days, and the fundraising team were there to talk to as many of them as possible! We went armed with new leaflets, brochures and postcards to spread the word of the charity and engage with people about what we do, which proved a huge success. The Expo also allowed us to meet the majority of Team RP before race day, and it was fantastic to chat to them about how they were feeling and to thank them in advance for their tremendous efforts. The team members also collected their running vests and t-shirts which had been printed with their names, and had their photo taken in the specially made Team RP photo frame.

On the Saturday we had a few special guests at our stand. None other than RP Man (aka Mark Baxter) came along, and he helped to hand out leaflets, posed for photographs, and talked to people about his personal experience of living with RP. In the afternoon we were also joined by Paralympians Dan Powell and Libby Clegg, along with guide dog Hattie. They all created a real buzz at the stand and attracted more people than ever. Hattie was very popular and definitely enjoyed the attention!

Sunday was a cool but sunny day – perfect for the runners! The fundraising team set up at the Taj Hotel, ready to greet the amazing runners when they finished. Using the Virgin Money London Marathon app we tracked each runner to see how they were getting on and were very impressed with the progress made. Every single runner finished the marathon with fantastic times, a great achievement! They were greeted at the hotel by the fundraising team, friends and family, and were treated to well-deserved sports massages from Hannah Kenny from Body2Go and Liz Pimperton. They then enjoyed showers in the spa as well as a buffet. The atmosphere at the post-race reception was excellent, with everyone cheering each time another runner returned from the race.

Thank you to Mark Baxter, Dan Powell, Libby Clegg, Hannah Kenny and Liz Pimperton for volunteering their time for these events, and a massive thank you and congratulations to all of the Team RP Runners! You are amazing!

Emily Purchase
Challenge Events Coordinator

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Scientific updates

Test tubesAs a new member of the team, and as part of the charity’s commitment to keep our supporters updated on the latest developments, I have been meeting with leading scientists and clinicians in the field of inherited retinal dystrophy research.

It has been fascinating to learn more about the range of conditions that fall under our banner, including retinitis pigmentosa (RP), Stargardt disease, Leber congenital amaurosis, Usher syndrome and choroideremia (to name but a few).  Visiting state of the art laboratories and meeting the teams of dedicated people involved gave me a real sense of the incredible skill, knowledge and passion which is driving vitally important research forwards.

Every researcher and clinician I spoke to felt that significant progress had been made in the last 10 years, but that the main barrier to the development of viable treatments was the level of financial investment available.  Despite 10% of all NHS outpatient appointments relating to ophthalmology, just 0.9% of research funding is allocated to the field.  It really hit home how important the work of RP Fighting Blindness is in the provision of funding, and what an impact our supporters can have through their generous contributions.

I’m looking forward to learning more about the science behind the research we fund, and meeting with some of our wonderful supporters at our Annual Conference on 24th June.

Deborah Laing
Trusts & Major Donor Manager

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Donorflex Regional Training Day, Birmingham

Last week I was excited to attend the Donorflex Regional Training day to learn more about the Customer Relationship Management system RPFB uses, and its upcoming improvement upgrade. We have to sort and store all kinds of information about events and activities, and by having efficient and effective databases, we’re able to do more and support more people.

I’m happy to report there are lots of helpful new features to add fresh power to our fundraising and events activities, and to improve our supporter communications.

The event was held in Birmingham and attended by lots of other well-known charities that utilise Donorflex and everyone agreed it was a very informative and well thought out training course.  We have lots of hard work ahead to plan and implement the upgrade but the new features will help us to comply with the upcoming European General Data Protection Regulation due to become law in the UK in May, 2018 and put protocols in place for managing supporter communication preferences for the years to come.

It was a great day and was fantastic to meet other charities and learn from how they administrate their databases, and I look forward to putting into practice all I have learnt!

Vanessa Davis
Supporter Services & Donor Management Officer

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Stargardt’s Day, London

On Saturday 18th March I attended the Stargardt’s Day in London, sponsored by the National Institute for Health Research at Moorfields and UCL.

The event was organised by Professor Andi Skilton and approximately 150 people attended, many of them Stargardts patients as well as family, friends and professionals. The event was inspired by conversations with and enquiries from people with Stargardt disease and it was designed in partnership with patients and relatives to make it relevant and meaningful for those attending. It worked!

The day brought people together to share experiences as well as hints and tips for daily living. It provided valuable information about the condition and some of the research being undertaken to address it from researchers and clinicians from UCL Institute of Ophthalmology and Moorfields Eye Hospital.

Stargardt disease is a rare inherited condition affecting approximately one in 10,000 people and is the most common form of inherited juvenile macular degeneration. The progressive vision loss associated with Stargardt disease is caused by the death of photoreceptor cells in the central portion of the retina called the macula. The macular is the area at the back of the eye which is responsible for the fine detailed vision necessary for activities such as watching TV and reading.

Whilst people with Stargardt’s do not lose their peripheral (side) vision, many people will reach the point of severe vision loss.

During the day there was plenty of opportunity for everyone to mingle and visit the information stands, including our own RPFB stand.

I was also invited to take part in an Information Exchange session in order to discuss what people feel should be the priorities for the future in terms of support and how those priorities may best be addressed. It was an enjoyable and informative day for all involved.

Denise Rawden
Engagement & Support Officer

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Hair, makeup and skincare workshop

On Saturday 18th March I attended a hair, makeup and skincare workshop for people with sight loss, organised by RP Fighting Blindness Ambassador Bhavini Makwana.

The event took place in London and saw around 30 visually impaired people come together to find out more about skincare routines, products and hair and makeup techniques.

As well as being a very informative event, it was also a great social opportunity, and it was clear that many friendships were formed.

The morning began by dividing everyone into four groups, with each group having a workshop with a different beautician on different aspects of skincare and makeup application. Each workshop was 30 minutes long, and then they moved onto the next workshop until everyone had experienced each one.

After a delicious lunch it was time for the pamper sessions where people had the chance to have their hair and makeup done professionally. There was also a henna artist there which proved very popular. The beauticians stayed to answer any additional questions on specific issues and techniques, and commented afterwards that they found the event very inspirational and that they had learnt a lot from the day.

At the end of the event there was a raffle, with prizes such as makeup brushes, headphones and some beautiful canvasses painted by the henna artist.

It was a very glamourous crowd which left the workshop that day, with everyone having learnt a great deal and having had an excellent day. Thank you to everyone who attended, all the amazing beauticians and of course Bhavini for organising the whole thing!

Emily Purchase
Challenge Events Coordinator

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The Northern Alliance RP & Ushers Group meeting, Newcastle

I was recently invited to attend the The Northern Alliance RP & Usher Group meeting, which is held in Newcastle. I was delighted to accept and one chilly Saturday earlier this month I headed up on the train to The Bridges Hotel, Castle Square, Newcastle.

This group was created to cover a mix of needs; socialisation, fundraising and the provision of information – quite a mix, with a great mix of people attending too!

I arrived just before 1pm and was swiftly brought a very welcome drink and offered food; I met two of the group’s attendees, Lynn and Lewis, both whom have Usher Syndrome.

Group organiser Colin Hetherington took to the stage and spoke a little about the group and what’s been happening over the last few months; it was decided by unanimous vote the group would be fundraising for RPFB going forwards which of course we both delighted about and very grateful for.

The first speaker was Gavin Neate from Neatebox, talking about his fabulous invention which assists the disabled to use traffic lights with ease; Gavin had worked for Guide Dogs for 18 years, but decided to develop software that would benefit all disabilities when using crossings. His talk was informative and very interesting.

I then took to the stage and spoke about where the charity was in terms of development since my last visit to the group two years ago. The group had also grown since then and I spotted many new faces in attendance.

Two scientist took to the stage from Newcastle, who work with Prof Majlinda Lako and spoke about their team’s work; I helped out by interpreting some of the heavy scientific information in lay terms.

It was great meeting so many new faces, as well as catching up with some of the old! The Northern Alliance RP & Ushers Group is doing some great work and clearly having a great time doing it – we wish them the best of luck as they expand!

Michelle Carter
Fundraising Events Manager

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UK Genetic Disorders Leadership Symposium, London

This past weekend saw the UK Genetic Disorders Leadership Symposium take place in Charring Cross, London. I attended representing RP Fighting Blindness, and heard from some inspiring speakers and experts in a number of different fields.

The event kicked off with a dinner where all the delegates were able to get to know each other, and we were encouraged to share experiences from our own particular areas of knowledge and interest. The following day consisted of speaker presentations and lectures covering a broad range of topics from public relations to inclusive events and from effectively sharing information with healthcare professionals to the impact of Brexit on British medical research. There was a lot of food for thought!

Caroline Harding, Chief Executive at Genetic Disorders UK played host for the day, and spoke herself about harnessing the impact of the genetic disorders community to increase awareness and raise more funds. Technical and medical presentations were given too, providing a fascinating glimpse into other genetic conditions outside our usual spheres.

Most valuable was the chance to chat with and compare notes with sector colleagues – often at such events the entire timetable is taken up with talks and presentations, leaving very little time to digest their content with other delegates, or to forge new relationships with other organisations. Luckily this wasn’t the case, and we were actively encouraged to reach and speak with new people – I was fortunate enough to meet several people from the sight loss community there, and am looking forward to speaking with them again about a number of different topics and ideas we raised.

Sincere thanks must go to the symposium’s sponsors, who covered all costs including delegate travel.

It was a pleasure representing the organisation at this important meeting and I very much look forward to next year’s event.

Thomas O’Neill
Communications & PR Manager

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Marketing Week Live 2016

Yesterday I attended Marketing Week Live at Olympia in London. The exhibition runs every year and showcases the latest trends, technology and products to effectively communicate with your audience, as well as delivering workshops lead by leading professionals in the marketing world.

Our fundraisers and supporters are so important, as without them the charity wouldn’t exist and we wouldn’t be able to continue to fund ground breaking research or support those affected by an inherited retinal dystrophy. With this in mind we want to be able to provide our supporters with the tools they need to fundraise to the best of their abilities, and so I was on a mission to find new and exciting merchandise that our fundraisers could use in their efforts. It also gave me the chance to talk to a lot of different companies who supply such items, so as to get the best possible price for the fundraising collateral needed.

While I was there I also attended an excellent workshop on optimising social media to reach more people. I was keen to find out as much as I could so that we as a charity can spread the word to more people about RP and the related conditions. The more people we can reach, the more people we can support. In theory this would also attract more fundraisers so we could fund more research to bring us closer to finding a treatment.

The day was very inspiring, and I have come away buzzing with ideas of how to build our audience and let more people know about inherited retinal dystrophies, the research we fund, the opportunities available to contribute to this research, and the amazing support services we provide.

Emily Purchase
Challenge Events Coordinator

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