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This Newsletter is dedicated to the memory of Chris Jardine, ourChairman since 2005. In September 2018 Chris announced his r etirementand that he would be stepping down in March 2019. Sadly Chris s uddenlypassed away in February, a day after we had made our Thank You A wardto him.

Chris has supported me in my post of Secretary and attended many BAD (BritishAssociation of Dermatologist) Conferences. Although he didn’t want it known, Chrisgave many large donations to the support group including 2 of the bursaries forfamilies to attend the 1st International XP Patient Conference last year. I would like totake this opportunity to thank you all who sent messages of condolences which werepassed to his wife Jane.

Because Chris gave us so much time before his retirement, we were able to find afind a new chair who was due to take over on 1st April. Annette Dearmun known asNettie (see picture bottom left), joined us in December as Chair Designate and took upher post officially at our Board meeting in March. Some of you may have met her asshe attended Owl Patrol and is present at some of the XP Clinics. Nettie retired lastyear as the Head of Nurse Education at Oxford University Hospitals..

Many of you know that I have been saying for a long time that I would like to retire. Itwas agreed that at our last Board meeting that I will retire after my 65th Birthday inJune 2022. To that end we are looking to recruit at least two more Trustee, to help usspread the work.

We are looking for 1) An adult to represent the views of our over-18 patients2) A Fundraising Trustee3) A Trustee with Administrative experience

If you are interested please contact our new Chair, Nettie: Annette.dearmun@gmaiL.com

As trustees we hold four meetings a year, usually in Prestwood, Bucks but we are happy to meet in other venues and you can still participate through Skype or FaceTime

In this Newsletter you will find the Owl Patrol 2020 application form. Applications are now open. You can you use the form on page 3 or apply on-line at http://xpsupportgroup.org.uk/owl-patrol/

The British Association of Dermatologists have awarded us a grant for a pilot project of two weekend trips on UV protected Narrowboat. The trip for over-18’s will take place from 27–30 September 2019 and the 11–17’s trip will take place from 7–-9 August 2020. For more details please see page 6

Welcome to our ‘new look’ Newsletter

XP Support Group | Instron House | Coronation Road High Wycombe | Bucks HP12 3SY

T +44 (0)1494 890981 | E info@xpsupportgroup.org.uk

July 2019 | Edition 1

We are fortunate that we have had the opportunity of some Pro Bono work from OPEN HealthGraduate scheme. They are working alongside us to update our communications. The new designof the Newsletter, A TV Advert for Owl Patrol, 2 pull up banner, our new schools leaflet are just afew things they have done for us. You can read more about them on page 7

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Fundraising trustee

Can you spare a few hours a month? We are looking for someone to take on the role of fundraising trustee for the XPSG. If you are interested, know someone who might be, or would just like to know more, contact fundraising@xpsupportgroup.org.uk

April was a busy month for fundraising,as Jodie Holden, whose daughter Livvyhas XP, ran the London marathon,raising over £3,000. This was Jodie’sfirst ever marathon, and Jodie put inhours worth of training in the monthsleading up to the race, as well asovercoming injury to make sure shecould do it. A brilliant result Jodie!

Climbing Ben Lomond and running theLondon marathon are two greatexamples of two families directlyaffected by XP, giving something back tothe charity that supports them byfundraising. The XPSG is entirelydependent on fundraising and grants tobe able to provide patients with traveland accommodation expenses whenattending the clinic, as well as providingvisor film and paying for cars andhouses to be protected with UV film.

The first half of 2019 has seen some greatfundraising efforts for the XP SupportGroup. In April, one of our youngestfundraisers raised an incredible £2,000!Hazel, who was 11 at the time and whoherself has XP, climbed Ben Lomond inScotland with her Dad. Ben Lomond is974 m high and is the first Munro thatHazel has climbed. (A Munro is a hill thatis over 3000ft or 914metres) The walktook just over five hours to complete, andalthough it was very cold and windy at thetop, according to Hazel, the views wereworth the climb!

Fundraising

July 2019 | Edition 1

Genes for Jeans week – 16 th September – 20 th September 2019Genes for Jeans week is the annual fundraising event for Genetic Disorders UK, and the XPSG has partnered with them so that you can select XPSG as your nominated charity and 50% of funds that you raise at a Genes for Jeans event would go directly to us. It’s really simple – if your workplace or school will support it, you can ask everyone to come to work/school in their jeans and make a donation of £2. Of course the fun doesn’t have to stop with wearing jeans to work – from blue cake sales and end-of-day cocktails to guessing the number of blue sweets in a jar, the more fun you have the more money you can raise. There’s lots more information about how you can take part on the website https://www.jeansforgenesday.org/

A special Thank you.

We would like to say a special thank you to the following organisations and individuals who have donated or raised funds on our behalf

THE FLAILING PITS BAND, their gig raised £315 for the support group

SAINSBURY’S , PRESTWOOD, £1,254 from their carrier bag scheme

ROTARY OF GREAT MISSENDEN, £275 from their Christmas collection

OASIS LANZ SUPPORT GROUP, £2,120 in memory of Chris Jardine

AMATI GLASGOW - £426

THE AYRE FAMILY - £50 in memory of their daughter Louise

OPENHEALTH GRADUATE SCHEME £1,000, please see more about the scheme on page 7.

RAISE MONEY WHEN YOU SHOP!

When you shop @AmazonSmile, Amazon will make a donation to XP Support Group. So please keep us in mind when you shop online! https://smile.amazon.co.uk/ch/1075302-0

One small way every family could help with fundraising is by taking part in Genes for Jeans day – see information below.

July 2019 | Edition 1

Applications are now open for Owl Patrol 2020 and will close on 30th September 2019. The theme is “1970’s Pyjama Party”. All applications received by this date will be considered and allocated on a 60% returning campers and 40% new. Payments must accompany application.

Name of Camper

Age if 16 or under

Address

Postcode Country

Tel No

E-mail

Other family members who will attend (please provide names and ages)

While there is no charge for patient campers, for those accompanying we do ask for a contribution of £20 for adults and £15 for children

Cheques should be made payable to the “XP Support Group” or by bank transfer to Account no 00269557 Sort Code 30-93-67

Please return to:

XP Support Group, Instron House, Coronation Road, High Wycombe Bucks HP12 3SY

Owl Patrol 14–17 February 2020

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July 2019 | Edition 1

It has been a busy period in the XP clinic! The XP International Symposium took place in Cambridge for the 3 days March 20th–22nd, & was a great success. Over a hundred scientists, clinicians and patients from all over the world (especially Japan, the USA, Africa, the Middle East and Europe), including all the research teams at the forefront of XP research, attended and presented their exciting and innovative research work. In the feedback from those attending we were delighted to see that the Patient and Family-led session was the most popular especially with the laboratory research scientists. Many thanks to all the patients and their families who took the time and trouble to share their life stories with the researchers. A few weeks later the XP clinic team was honoured to be awarded the prestigious British Medical Journal ‘Dermatology Team of the Year Award’. The judges said: ‘An international example of a team project which shows clear impact on patient care. This is a group of patients with a rare condition. It was unmet by the previous NHS system. This project has a patient support group which is integral to the work that they do. In dermatology, there are other rare diseases that can benefit from learning from this example.’ The awards ceremony was a memorable evening as you can see from the photograph. On 28th June the XP Nurses hosted the ‘XP Teachers’ Study Day’ where every school attended by a pupil with XP, has been invited. Feedback from this event will be in the next newsletter. The clinic continues to grow. We now look after 109 patients with XP. The feedback from patients collected after each clinic, has been very positive. We welcome further comments as to how we might improve the service further. We are on the web at www.gstt.nhs.uk/XP. - The XP Team

Update from the XP Clinic Team

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July 2019 | Edition 1

Update from Teddington TrustThe BIG Tedding Trust Adventure Sleepover 2019

Following the great success of last year’s event we are running this again this year, and extending it to two nights. Families will get to spend time together which taking part in a host of activities, such as archery, fencing, rock climbing, laser quest and team building, all topped off with a sing-off around the campfire and additional evening entertainment! LAST FEW FAMILY SPACES REMAININGSee attached poster for full details and click here to register your place http://www.teddingtontrust.com/the-big-sleepover.html

Patient Services

We continue to work hard on supporting families with FREE UV protective hats and gloves as well as supporting with DLA/PIP and Blue Badge Parking and grant funding applications. To find out more please email Nicola on support@teddingtontrust.com

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July 2019 | Edition 1

New Project for XP Support Group Following the outcomes of the survey carried out on our behalf by OPEN Health, it was clear to us that our families and patients felt we were not carrying out specific age appropriate activities. To that end we successfully applied to the British Association of Dermatologists for a grant to carry out a pilot project with Hillingdon Narrowboats Association. The XP Support Group will be holding two weekend events on board a Narrowboat where participants will learn to steer, open locks, shop and cook together and make new friends.

The first weekend will be for over 18’s and will run from 27–30 September 2019 , the 2nd weekend will be for 11–17’s and will run from 7–9 August 2020There is maximum of 8 places available for each trip. The weekend is free of charge and participants will only require pocket money for things they wish to buy when they stop at the supermarket. We will also pay travel expenses. There will be 2 XP volunteers as well as 2 from Hillingdon Narrowboats. All volunteers are DBS checked. For more information about Hillingdon Narrowboats, please see their website at http://hillingdon-narrowboats.org.uk/index.php/en/

The Adults weekend is open to all XP patients over 18, and you may be able to bring a partner if there is enough space. The young peoples weekend is open to XP patients and their siblings who must be 11 or over.

If you would like to attend or would like your children to attend, please email sandra@xpsupportgroup.org.uk or call on 07786-392192. Please note this event is only open to UK patients and families

If the feedback from these pilot projects are positive, we will look to do events for families or all girls or all boy groups in the future

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July 2019 | Edition 1

OPEN Health Graduates and the XP Support GroupWritten by OPEN Health Graduates on Monday 1st April 2019

During our graduate induction period in September 2018, we were asked to find a charity that could benefit from the expertise of the OPEN Health practices. We made the decision to work with the XP Support Group (XPSG), which is a charity based in High Wycombe that works with individuals affected by Xeroderma pigmentosum (XP).

XP is a rare skin condition where individuals have an impaired ability to repair DNA damage caused by UV light, often resulting in dry skin, pigmentation and increased susceptibility to skin cancer. As a result, individuals have to avoid sunlight by wearing protective clothing and sun cream. The XPSG works with individuals with XP to provide tips for staying safe in the sun and how to avoid harmful UV rays, even whilst indoors.

Some of our OPEN Health graduates with Sandra, the founder of the XP Support Group, at Owl Patrol 2019

We initially sent out multiple questionnaires to individuals with XP aged 16–35 years to help understand what motivated them to get involved in an XP support group. This information will be useful for the XPSG moving forward, as it will allow them to tailor activities in order to meet the needs of a wider range of affected individuals. To compliment these insights, we also devised a helpful ‘social media handbook’ to help the charity engage with potential new members and reconnect with their existing supporters.

Some of us also went along to the annual XPSG ‘Owl Patrol’ – a camp for individuals with XP where they can meet other affected individuals and take part in various organised activities. This year’s theme was Harry Potter and included a trip to the Harry Potter Studios! This was a fun opportunity to get involved with the XPSG and it was a great insight into the support the charity provides.

We have also been working on developing an animation and an infographic to be shown in clinic waiting rooms, with the aim of encouraging more individuals with XP to get involved with the XPSG. In addition to this, we have been working alongside the charity to develop new branding to freshen up their current materials, such as the monthly newsletter.

At the Marlow Christmas Market, we managed to raise £500 by selling goods such as delicious homemade cakes and the XPSG Christmas cards. We have more fundraisers planned to support this fantastic charity throughout 2019.

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July 2019 | Edition 1

Dates for your diary201916–20 September – Jeans for Genes week27–30 September – Narrowboat trip for over 18’s, Rickmansworth29 September – Trustees’ Meeting1 December – Trustees’ Meeting

202014–17 February – Owl Patrol, St Katharine’s Parmoor29 February – Rare Disease Day7–9 August – 11-17’s Narrowboat trip, Rickmansworth12–16 November – 2nd International XP Patient Medical Conference and Camp, hosted by the XP Family Support Group, in Minneapolis, USA

Clinic dates:Children’s: 23rd August, 27th September, 25th October, 22nd November, 20th December 2019Transition: 30th August, 29th November 2019Adult: 9th August, 13th September, 11th October, 8th November, 13th December 2019

Office closuresPlease note the office is no longer manned and we have changed our telephone number to 01494-890981. To contact Sandra Webb please email: sandra@xpsupportgroup.org.uk General enquiries should be sent to info@xpsupportgroup.org.uk

During 2019/20 Sandra will be travelling extensively, and will try to answer emails. If you need to speak to someone, please do not call the office, as she will not be able to pick up voicemails. You can call her mobile 07786-39192 but please only emergencies as she will be in different time zones. The dates she will be away are 30 August–20 September 2019, 15–30 November 2019, 20–25 February 2020, 5–1 9 March 2020 and 12 May–12 June 2020

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