Look Forward
Issue 160 November 2016
Inside
Christmas Cards
RNIB How I See Campaign
Membership Reminder
40th Anniversary Update
Gift Aid
Cane Enable Campaign
RP Genome Project Update
New RPFB Ambassador announced
RPFB Families Conference
Meet the Team
A successful and productive year draws to a close
2016 has been an exciting year, with our 40th Anniversary activities bringing together many people across the UK. As well as our special annual conference, which welcomed over 170 delegates, we saw many fundraisers, dinners and gatherings to mark this important milestone in our history. We are delighted so many people enthusiastically joined in with helping us make 2016 a year to remember. We now look to 2017, and you can learn about some of what we have planned in this issue of Look Forward, and by checking our website and various communications in the New Year.
Letter from the Chief Executive
Tina Houlihan
Welcome to the latest edition of Look Forward. To say it has been a busy and productive year is an understatement - making for a very full and interesting issue; please enjoy!
Our incredibly popular Patient Information Days are going from strength to strength and continue to move from region to region helping to inform and enthuse attendees about the most up-to date research, services and advancements. The upcoming 2017 national schedule will be announced soon - watch our various communications for updates, and please come along to one near you and learn more.
Recently, you may have heard on the radio or seen on social media our highly successful Cane Enable campaign, designed to educate about the benefits of cane usage when you are partially sighted - please read more about it on page 14 or visit our website to see the accompanying videos. Collaborating with the RNIB and Thomas Pocklington Trust we are undertaking some research into the challenges around employment with a view to increasing and improving support, services and information. Please do let us know if you wouldlike to be involved.
Please do feel free to email me at
should you wish to get in touch with me for any reason.
Thank you for your ongoing support.
Contact
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.
RP Fighting Blindness
PO Box 350
Buckingham, MK18 1GZ
E:
T: 01280 821334 (OFFICE)
T: 0845 123 2354 (HELPLINE)
RPFB Christmas Cards
It’s your last chance to purchase our RP Fighting Blindness charity Christmas cards! At just £2.50 for a pack of six with envelopes (plus postage), they’re great value.
Skilled artist Tina Wray, who has RP herself and just five per cent vision remaining, has painted these two beautiful images and donated them to the charity. In addition, the printing of these high quality A5 cards has been donated free of charge, which means every penny of the sale value of the cards goes tosupport the work of RP Fighting Blindness.
Each card contains a simple ‘Season’s Greetings’ message. You are able to purchase them using your credit or debit card by calling the office on 01280821334.
These cards are always popular, so make sure you get your order in soon!
How I See: An RNIB film project
With a group of people who have low vision, RNIB has developed a film called How I See. The film aims to explain simply to the general public that just because someone is registered blind or partially sighted - and maybe even uses a cane or guide dog - it doesn’t mean they can’t see anything. It also strives to highlight that just because someone isn't using a cane or a guide dog it doesn't mean they're fully sighted.
93 per cent of people registered blind or partially sighted can see something, which often comes as a surprise to many fully sighted people. The How I see film explains just that - how a group of visually impaired people see the world around them. The group of people that liaised with the RNIB for the film was led by Annalisa D’Innella, who has RP herself.
Along with four other visually impaired people, talking about their experiences and their sight loss, RP Fighting Blindness trustee Rachael Stevens features in the film;
“When I drop my children at school I use the double buggy. I look like any other sighted mother. Once the children are at nursery I leave my pram there and use my white cane on the way back. So I look like I've suddenly morphed into a visually impaired person and people find that quite confusing!” We encourage you to share the film with friends and family as it will help those who have no experience of sight loss understand more about our community.
The film is being shared online and across social media with the hashtag #HowISee and is available to view at
Researchers find way to boost CRISPRCas9 efficiency by up to five times
Researchers have found a simple way to boost the efficiency of the ground-breaking gene-editing technology CRISPR-Cas9 by up to five times.CRISPR-Cas9 is a technique for knocking out genes in human cell lines to discover what the genes do, but the efficiency with which it disables genes can vary immensely.
The new technique could make it easier to create and study knockout cell lines and, potentially, disable a mutant gene as a form of human therapy. CRISPR has application for developing a treatment for a range of condtions, including RP, as previously reported.
In the study, published in the journal Nature Communications, the researchers described that the process can be made more efficient by introducing into the cell, along with the CRISPR-Cas9 protein, short pieces of DNA that do not match any DNA sequences in the human genome. The short pieces of DNA, called oligonucleotides, seem to interfere with the DNA repair mechanisms in the cell to boost the editing performance of even mediocre CRISPR-Cas9s by up to five times.
Once Cas9 cuts, the cell exactly replaces the cut DNA, which Cas9cuts again, in an endless cycle of cut and repair until the repair enzymes make a mistake and the gene ends up dysfunctional. It is thought the oligonucleotides decrease the fidelity of the repair process, or make the cell switch to a more error-prone repair that allows Cas9 to more readily break the gene. With higher efficiency, researchers will have better success at creating the knockouts they want, and then using those knockout cell lines to explore the function of a gene or a group of genes. Because most long-lived cell lines are derived from cancer cells these cell lines typically have more than the normal two copies of each gene. This can make it difficult to knock out all copies at once, and higher efficiency greatly increases the chance of success. High efficiency also is essential when knocking out genes to correct hereditary mutations in humans. Physicians have speculated about knocking out genes that make people
susceptible to infectious diseases, such as AIDS, or prone to autoimmune, inflammatory or neurodegenerative disorders.
However, it remains to be seen whether the approach could be used in a therapeutic context.
Early data demonstrates stem cell transplants in humans with RP are safe
The first results of an in-human stem cell transplant to treat retinitis pigmentosa were released by regenerative medicine company jCyte.
The transplants are safe and well tolerated six to 12 months after injection of the immature, undifferentiated retinal cells into one eye, the company said. The next step, a phase IIB clinical trial, could get underway as soon as next year, co-founder of jCyte, Dr Henry Klassen, told Optometry Today.
A number of patients received the stem cells, which were allogeneic or derived from an unrelated donor, in the trial funded by the California Institute for Regenerative Medicine. The research was conducted at the University of California, Irvine and the Los Angeles-based clinic, Retina Vitreous Associates.
Dr Klassen highlighted that: “To enrol in this initial safety trial, the patients had to be severely impacted visually and at a relatively late stage of disease progression.”
The first patients to receive the transplants had very low vision left - some were only able to see hand motions - though later patients with better vision were then also offered the treatment, once initial safety data first became available, he said.
Dr Klassen, said the initial results are pleasing, adding: “RP is an incurable retinal disease that first impacts people’s night vision and then progressively robs them of sight altogether. This is an important milestone in our effort to treat these patients.”
The phase IIB trial will look at how effective the transplants are, he said.
“The goal will be to show statistically significant benefits for the treatment, versus the control, group in terms of specific, clinically relevant visual functions.
“The timeline is yet to be determined, but [the trial] could get underway during the next calendar year, 2017,” Dr Klassen concluded.
Fundraising Gala Dinner and Auction
On Friday 23rd September, over 160 people attended a special celebratory gala dinner at Skinner’s Hall in London. Organised by RP Fighting Blindness Trustee Roger Backhouse, the event was held to mark the 40th anniversary of the charity, as well as the phenomenal success of the 2016 London Marathon runners.
The dinner kicked off with a drinks reception on the roof terrace, where guests also had the opportunity to buy raffle tickets to win a fantastic £5,000 voucher for Boodles jewellery; we would like to thank Boodles very much for donating this amazing prize!
Once guests were seated in the Great Hall, there were speeches from Roger, researcher Professor Robin Ali and RPFB’s chairman Don Grocott, followed by a game of Heads and Tails.
Throughout the evening, guests were able to bid on a silent auction using iPads; prizes included a week in a cottage in Cornwall, a wine tasting experience, tickets tosporting fixtures, a flight in a Piper Archer aircraft and many more!
After the delicious dinner there was also a live auction with a star lot of a week for up to six people in Antigua. Thanks must go to all who donated the fabulous prizes!
The event was brilliant from start to finish, with everyone having a great time while raising over £50,000 for the charity. Thanks go to everyone who attended, bid on the auction prizes and joined in with the games, and of course special thanks must go to Roger for organising it!
Bath Half Marathon 2017
Join Team RP for the Vitality Bath Half Marathon on 12th March 2017!
The Vitality Bath Half Marathon is one of the longest established and most popular city centre road events in the UK. The course itself is fast and flat making it suitable for all abilities for beginners whose key objective is simply to complete the course, to more regular long-distance event runners looking to beat their personal best time. It covers a two lap 13.1 mile traffic-free course straddling both sides of the River Avon. The race starts and finishes in Great Pulteney Street, in the heart of the Georgian splendour of the city.
We have 10 places up for grabs in this fantastic event, so get in touch today to join the team!
For more information or to register your interest please call Emily
Purchase on 01280 821334 or email
Corporate partnership
Working with corporate supporters is very important to RP Fighting Blindness, and we understand your company is unique. When you partner with RP Fighting Blindness, we really want to get to know you - your company, employees, business and objectives. From simple, easily implemented fundraising ideas to a fully-fledged Corporate Social Responsibility programme, your support will make a huge difference.
Opportunities include:
Charity of the year
Employee Giving
Corporate Team Challenges
Payroll Giving
Sponsorship
To discuss a corporate partnership with us, please contact RPFB’s fundraising team on 01280 821334 or email
Save the Date
Sportsman’s Dinner 6th April 2017
An evening with sporting celebrities at the Waldorf Hilton in London.
Celebrity guests to be announced!
To register your interest in the event, email the fundraising team on
RP Fighting Blindness Membership
We’d like to say a big thank you to everyone who plans to continue supporting RP Fighting Blindness in 2017 as a member.
The membership subscriptions are a vital addition to our annual revenues and help us across many different areas of our work.
For historic reasons, many of our members’ annual fees are due in January. If this applies to you and you have not yet submitted payment, please can we ask you to send your payment or call the office and payover the telephone using a credit or
debit card. Any cheques should be made payable to RP Fighting Blindness for £24. Of course, if you pay by Direct Debit you do not need to take any action. You can transfer to Direct Debit by calling the office on 01280 821334.
If you are not already a member but would like to be you can join by calling the office or visiting our website and searching for “membership”.
Thank you for your support.
Collection cans and fundraising materials
Do you have any RP Fighting Blindness collection cans at home that you’re no longer using? Maybe you have other materials left over from fundraisers or events you’ve held in the past? If so, we’d like to hear from you!
Every year, RP Fighting Blindness sends out boxes of collecting cans, collecting buckets, banners and other resources to fundraisers across the country, to help them promote and fundraise at their events.
All these things cost the organisation money to produce - while we do our very best to keep track of such resources, many items get shared around Local Groups or are left with schools or community centres for future fundraisers and so can’t be sent out to other people organising events in the meantime.
That’s why we’re asking if you have any roller or vinyl banners, collecting cans or buckets, or anything else similar, to let us know so we can arrange to have items collected and delivered back to us. 2017 is set to be a busy year for theevents team, and the more we haveto help our fundraisers andcommunity supporters, the moreproductive they’ll be!
Please contact Fundraising Assistant Emily Purchase on call 01280 821334 if you have any materials you wish to return. You can also speak to the fundraising team about the ways we can help support you if you decide to run your own event.
40th Anniversary Activity Update
This year has proved an exciting one for the organisation; as you will be aware, 2016 marked the 40th anniversary of the founding of the charity and we commemorated this with a special 40th Anniversary Appeal, and many of our members up and down the country supported us by running events and fundraisers.
We asked our supporters to help us raise £150,000 in our anniversary year, to allow us to fund an extra scientific research project. So far, with your help, we’ve raised
£122,000 of our target.
You will remember we sent you one of our special 40th Anniversary pop up collection boxes, for you to save loose change in throughout the year; we’re asking everyone who used theirs to send us the total to help us reach our goal of £150,000!
You can send a cheque for the amount you’ve raised to:
RP Fighting Blindness,
PO Box 350
MK18 1GZ
Or you can pay by credit or debit card by calling 01280 821334, oralternatively you can pay in direct by visiting your local branch of Lloyds Bank and giving them our details. (Sort code: 30-18-83, account number: 11368368; please mark the reference on your paying in slip Appeal 40)
We’d like to thank everyone who has helped make our anniversary year such a success. Our special annual conference in June welcomed many old faces from the charity’s past, including members, researchers and staff, and we’ve seen some great fundraisers taking place. We’re very proud of our four decades of discovery, and we couldn’t have done it without the hard work and dedication of so many of our volunteers and fundraisers.
Gift Aid
You may have been contacted by RP Fighting Blindness recently regarding your Gift Aid status; this is because we want to ensure we have the most up to date information about those who generously donate money to our cause.
Gift Aid allows charities to claim the basic rate tax on every pound donated. This means if you donated £100 to RPFB you could effectively be giving us £125; giving under theGift Aid scheme means that somuch more money can be raised at no extra cost to our donors or the charity.
It really does make a big difference and last year alone we raised an extra £74,000 thanks to our supporters donating via the Gift Aid scheme.