Sturge Weber UK NEWSLETTER SEPTEMBER 2017

Dear Everyone, Contents This is a bumper newsletter as I didn’t produce one 1 Dear Everyone in the spring this year due to family health issues and 2 Scottish Day spending so much time in hospital. 100% to Sturge Weber UK 3 Sturge Weber UK Chair Report 2016 It’s almost a year since our last Family Weekend 4 Skincare after Laser Treatment Conference. You can read all about the last one inside Broxbourne District Rangers this issue. 5 Sam's Story I would like to thank everyone who has contributed 6-7 The Eye in Sturge Weber Syndrome articles, stories and have written about their fundraising 8 Sturge Weber UK Online Store events for this newsletter. I hope you all enjoy reading 9 Brain Surgery reduces Seizures  Calendar it. 10-11 Treasurer’s Report  Fundraising T Shirts 12 Giving Page Contact a Family Best wishes,  13 Sturge Weber Syndrome Family Day Jenny 14-17 Family Weekend Conference 18 Frances's Funday Darlington Community Carnival 2017 19 Chloe's Story 20 Raising Awareness for Sturge Weber in Italy Connie’s 90th Birthday 21 GOSH Team Workshop  Joy’s 70th Birthday 22 What are the different types of Sturge Weber Syndrome? Sturge Weber UK Mummies Respite Weekend 23 In Memory  The Family Fund 24 We need your help  Cerebra Lending Library 25 Hallen Village Hall Charity Night 26-27 Sturge Weber Family Weekend Summary Sturge Weber Awareness Day 28 Caity’s Progress Frances Phillips July 2016 Fundrasier 29 Channelle’s Story 30 What’s that on your face? 31 Raising Money for Sturge Weber Syndrome Grannie’s Promise 32-33 Petty Pool  Me and My Face 34 Beautyzone Salon Sturge Weber UK Christmas Cards 35 Christmas Cards 2017 Order Form 36-37 Sturge Weber Away Day 38-39 Melissa’s Story  Independence Equipment 40 Fundraising - Collection Boxes 41 German Sturge Weber Family Weekend 2017 42-43 Sturge Weber UK Family Weekend Conference 2018 44 SVB UK Three Peaks Challenge Family Weekend 45 Who can claim Carer's Allowance In Memory of Warren Van Oestren 5th, 6th2018 and 7th May 46 Friends in England 47 Sturge Weber UK Facebook and Twitter pages 48 Thankyous Scottish Day 2016 We arrived at the lovely Glasgow Hilton Hotel for our first Scottish Sturge Weber meet. I was a bit nervous as to how the day would go but after being in the room with so many wonderful people I realised there was nothing to be nervous about. The day went along amazingly. I was one of the last to arrive and everyone was chatting away to each other. Some people already knew each other and for those that didn’t know anyone they left with friends. There were all different ages of people with Sturge Weber syndrome, so many different birthmarks and so many different stories to be told and heard. After a quick settle in we all headed to the restaurant for a lovely lunch together. After that we were back to the conference room for the young ones to play with the soft play provided and for the older folks and parents to get a good chat with a coffee. Peter was on hand to take pictures of the day and was lovely to chat with and his snaps were fabulous. People travelled from all over. One family even came from down south to meet everyone. To see how Sturge Weber affects in so many different ways was unbelievable. For myself I personally felt positive, meeting and chatting to everyone reassured me that no two cases are the same and that everyone deals with it differently. Having spoken to many parents on the Facebook page it was a delight to meet in person and also meet their loved ones who suffer from the syndrome. Everyone enjoyed the day, the kids had a great time and enjoyed the balloon maker near the end. I left with new friends and so did Adam. I am very looking forward to another meet up to have this experience again, thanks to everyone involved in the setup of the day, Peter for pictures and to everyone who made it along. Wendy Harkins (Editor’s note) The next Scottish Day will be held on 24th September 2017 at the Hilton Glasgow. Jenny has contacted everyone in Scotland on the mailing list via post, e mail and on FB. If you would like to attend please e mail [email protected] 100% to SWUK! My Mum and Dad – Beverly and Ivan Massingham have been supporting SWUK since I became involved in 2012. My Dad retired from the building trade in 2015 and started to take up wood turning as a hobby. Throughout the year he produced many items from fruit bowls to children’s toys and when friends and family saw what he was able to make the orders rolled in. In the summer of 2016 my mum decided to have a stall at the Methodist church fete in her town of Sheringham Norfolk, selling some of the items my dad had made as well as some knitted items made by herself and her sister Pauline. All money raised through sales to SWUK! It was a really good day and many people asked about the charity and how Angelina had been affected. £95.00 was raised and many more orders came in! In the autumn she had another stall, again at the church in Sheringham and raised a further £80.00. In December Tesco in Sherigham gave permission to have a stall there. The wooden snowmen all sold within an hour and by the end of the day the table was just about empty. £353.11 was raised. Mum has booked to have another table at the end of this year at Tesco so Dad has been working hard and hopes to have enough snowmen to fill it. Lisa Massingham

2 Sturge Weber newsletter will be used for research purposes, to increase their STURGE WEBER UK understanding of SWS and to develop and enhance Chair Report 2016 management of the condition in the longer term. The At last year’s Family Weekend Conference we summary of this study was included in the August celebrated the Charity’s 25th Anniversary at the newsletter this year. Hilton Warwick. This year we are holding our We are also funding a research study evaluating conference at the Hilton Coventry as this hotel has cerebral perfusion in twenty patients with SWS at more interconnecting bedrooms to accommodate GOSH. The primary problem underlying SWS is an families. The weekend has again been extended to abnormality of venous blood flow within the brain. include Monday for those wishing to stay longer. This leads to a lack of delivery of blood (perfusion) As one of the Charity’s aims is to raise both public to the brain tissue with areas of damage which can and professional awareness of Sturge Weber then cause seizures and also weakness of the limbs syndrome, this year it will the Charity’s fourth like a stroke. Awareness Day on November 1st the date of the We appreciate all the effort and challenges families birth of Dr William Allen Sturge. As the Family take on raising money so the charity can support Weekend is so close to our Awareness Day, it’s an projects. Without fundraising events the charity excuse for the children have a balloon race on the would not have been able to have funded the two Monday morning. The furthest one of our balloons studies above last year at GOSH, costing £39,000 has reached in a previous year is Northern Germany. which will benefit those who have SW syndrome. I attended an Away Day on the 30th June 2016 with Many of you may already know Ashley Ide has written Dr Sarah Aylett and the team from the Sturge Weber the text for a book called, “What’s that on your face”. Clinic at Great Ormond Street Hospital. This is about a boy called Mikey with a Facial Port Mark Heathfield gave a presentation about the Wine Stain (Birthmark) inspired by his son Ashton questionnaire sent to families regarding the and his struggles. He aims to educate five to seven feedback on how helpful the emergency care plan year olds that everyone is unique in their own way. I had been. The total returned was 34%. They were recently met up with Ashley and Jo, the Illustrator, at only sent out to the families attending GOSH. The Dartprint printers in Tavistock to watch the various feedback was very positive and families found stages of the production of the book. The book will them very helpful when they attended appointments be launched at the Family Weekend 2016. Ashley in their local area. The charity originally asked has signed some copies so one can be given to each GOSH if they would produce these care plans in family at the Family Weekend. Sturge Weber UK 2012/2013, so it was good to hear that they had has funded this project and Ashley would like all the been advantageous for families. profit from the sale of the books to go to the Charity. Dr Sarah Aylett presented the Database progress Unfortunately we won’t be selling Christmas cards and an update of the Perfusion Study. this year. We are hoping to do so again next year if Regarding the study into the benefits of taking we can find a printer to print them at a reasonable aspirin, Sarah said that this may be a problem cost. I would like to thank Pam Stevens who has accessing European funding now that the UK are organised the printing and the sale of the cards for leaving the EU. Sarah thought it would be difficult many years. to find a Pharmaceutical Company to support Recently Antonia updated the Child Protection this kind of research unless it could be supported Policy. We have other policies in place such as Equal alongside another new epilepsy medication. Opportunity, Reserve Policy and many others that I asked Sarah if there should be a problem obtaining we require as a charity. This year Antonia, Lisa and unlicensed drugs such as Flunarizine or in fact if I have renewed our DBS check and completed the any other drugs would be affected by Brexit. She three hour online Child Protection Training. Both of said no and if anyone should have a problem they these have to be completed every three years. could ask their Paediatrician/Consultant to ring Pay Pal, Just Giving and Virgin Money Giving have Mahal Satvinder, Senior Specialist Pharmacist, proved to be popular ways of donating to the Charity Neurosciences at GOSH and he will be able let for fund raising events and we would like to thank them know where they can be obtained. the families who have raised money this way. Also Last year the Charity funded a Psychology Graduate Lisa for taking care of the online shop. to collate data gathered at the appointments of over I would like to thank families, relatives and friends a hundred SW children who attend the SW Clinic at for supporting the Charity over the last year. GOSH. Information gathered at these appointments Jenny

3 Sturge Weber newsletter SKIN CARE AFTER LASER TREATMENT The area treated with the laser may be bruised for 5-10 days. The skin is fragile and needs gentle handling.

You will need some Diprobase Ointment as a moisturiser to help stop the itching and dryness. This should be applied to the treated area 3-4 times a day, but should not be rubbed in. You must not put soap, bubble bath, shampoo or makeup on the lasered area for 1 week, as these can also dry the skin. If you get soap on the area, gently rinse with clean water. Do not rub the area dry, but allow to dry naturally or pat gently with a soft towel.

You should not go swimming for 3 weeks after the laser treatment. Games and P.E should also be avoided for 3 weeks, and you must be careful when playing, that you do not get the area rubbed, knocked or scratched. Any discomfort soon after treatment, can be relieved by applying an ice pack. Paracetamol can also be helpful.

Sunlight can cause birthmarks to turn brown, cause blisters and increases the risk of skin changes especially after laser treatment. You should not expose the birthmark to strong sunlight for a year after treatment Sun block cream or lotion must be applied (factor 50) at all times in the UK from March - October. If you are visiting a sunny country, sun block should be applied every hour during daylight. Try to avoid being out in the sun at it’s hottest i.e between 11am-3pm. If your birthmark is on your face, always wear a hat when you are out in the sun. For babies please use sun shades on the buggies and ensure the birthmark is fully protected from the sun.

PLEASE NOTE: If your child is sun tanned at the time of the laser treatment on their birthmark, we will not be able to treat with the laser at that time.

If you notice any scabbing or blistering to the area, you will need an antibiotic ointment. The laser nurses can arrange this with your GP for you. For this and/or if you have any questions please phone 0207 405 9200 and ask for Hilary Kennedy (CNS) on ext 1113 or [email protected]

Laser coordinator Graham Wilson can also be contacted on ext 5965

Broxbourne District Rangers Thank you to Broxbourne District Rangers for their support of Sturge Weber UK. Their 6th year! They put on a lovely stall at the Christmas concert of Wormley Scouts and Guides. They made sweet and hot chocolate cones for table favours for Christmas day. They looked lovely. Sarah and I sold Sturge Weber UK merchandise. They Raised £94.50 Sarah is now a Rainbow at 1st Wormley. The troop will be working towards their charity badge this year and their leader has decided that they will use the Sturge Weber UK for them all to study and support. I will let you all know how they get on. Thank you once again to Broxbourne District Rangers for supporting us and raising awareness. Jane Howard

4 Sturge Weber newsletter Sam’s Story This is our baby Sam’s story, he is 13 months old. Forgive me, it is long, but a lot has happened in 3 months. SAM IS HOME! After being diagnosed with type 3 Sturge Weber Syndrome (he has no birthmark) in January, no one expected the turn things would take. Back in January Sam was incredibly upset one day so I took him to hospital. Upon arrival he had the first of many 45 min-1 hour seizures. He continued to seize constantly for a week until we were transferred to the Evelina in London, where he was diagnosed. It was a huge shock as he has no birthmark. We knew that part of Sam’s brain had calcified and that it would cause him to have seizures. But we went home then thinking that we would be able to control them with medication and that the worst two weeks of our lives were behind us. No one expected the doctors nor us, the deterioration from that point. Sam’s condition escalated to him having 100s of seizures a day. One every 2 minutes to be exact. These would involve various seizure types, myoclonic, drop, focal tonic seizures. But mostly, he would have one and smack the floor, furniture, toys. It got so bad that in the last few weeks he was completely confined to the buggy. We couldn’t risk letting him crawl, he couldn’t even sit in the highchair as he would have a seizure and split his lip open. Not only were the seizures damaging his brain minute by minute, but he was injuring himself constantly. Sam was admitted as an emergency to Great Ormond Street Hospital. The doctors there couldn’t get the seizures under control, they worsened in fact. Dr Aylett fought incredibly hard for Sam and we are forever grateful, all the doctors and neurosurgeons we can’t thank enough for acting as quickly as they did. Having watched his decline over the 2 weeks we were there, they acted swiftly. Two weeks ago Sam had a right sided hemispherectomy. After many discussions with the doctors, and knowing all the risks, we knew it was our only option to give Sam a chance at life. After an agonising 8 hour operation, we were finally given news that it had gone well. Sam had needed a blood transfusion but other than that, he was ok. The days following the operation were really hard. We thought the surgery would be the hardest part but it was the uncertainty of the first few days that were the hardest for us. We knew Sam would be left very weak down his left side (he didn’t have this much before), forever partially sighted (due to visual field loss) but as his mum, the reality of seeing it has been 100 times harder. You can only prepare yourself so much. He had very high temperatures the first few days, he wasn’t able to take a bottle (more on this below!) his eyes got fixed to the right (refer to bottom also) and I can’t lie, I was scared. Then a couple of days after surgery he started seizing again. We were told this may happen, due to swelling of the brain, but it left us feeling distraught. There was never a guarantee that this will completely cure the seizures, nor will we know that they will remain gone forever, we can only hope. But on the 4th day after surgery Sam SMILED. He has had NO MORE seizures yet and as of last Wednesday, we are home. It is very early days and we have a very long road ahead of us with rehabilitation and we know there will still be many obstacles ahead. But, Sam is eating normally, he is rolling, he is laughing and smiling. He can’t yet sit or crawl again, (he couldn’t walk before due to seizures) but it’s early days. But he is my Sam and right now I feel like I have won every single lottery in the world. Sam has half a brain and he is owning it, and we couldn’t be more proud of our little miracle PS. Sam had a feeding tube that remained in longer than necessary as he couldn’t take a bottle or dummy, so they were worried he had lost his ability to suck/swallow. Turns out the tube stopped him being able to suck. Take the tube out and they can! Just in case it helps anyone, it worried me for days! PPS. Mr Tisdall explained that each hemisphere pushes the eyes to the opposite side, so when one side of the brain is taken away the ‘force’ of that side to push the eyes centre is taken away. This corrects itself over a few days - amazing to see how our incredible children adjust! Ally Phayer

5 Sturge Weber newsletter The Eye in Sturge-Weber Syndrome John L Brookes - Consultant Ophthalmic Surgeon Moorfields Eye Hospital & Great Ormond Street Hospital for Children I would first of all like to thank everyone who attended families weekend in Coventry for being so welcoming and interested in the discussion on the ocular complications of Sturge-Weber syndrome (SWS). Also, many thanks to Jenny for the invitation. I have the pleasure of working in 2 of the most well known hospitals in the UK, if not worldwide, which makes for a very interesting working life, as we see many of the most rare and complex eye diseases there are to deal with and I am particularly pleased to talk about the ocular complications of SWS, as I have a particular interest in the glaucoma that can arise from this disease. Moorfields Eye Hospital was founded in 1805 by John Cunningham Saunders, who saw the need for a specialist Eye Hospital when soldiers were returning from the Egyptian conflict, with a disease known as ‘Egyptian Ophthalmia’, which we now know as trachoma. Unfortunately, Saunders died aged only 37 years but left a large and longstanding legacy behind him. SWS is a rare disease, which occurs sporadically and not inherited, as many other congenital eye diseases are. It has been estimated that only 1 in every 50,000 children are born each year with SWS, which can affect the skin, brain and of course, the eye. The most constant feature of SWS is the facial cutaneous vascular malformation, often known as a ‘port wine stain’. Unfortunately, the disease can manifest with seizures, developmental delay and hemiparesis, as well as causing visual impairment, usually due to glaucoma. The condition can affect both sides of the face in up to 15% of cases and glaucoma is estimated to occur in up to 50% of children with SWS. The blood vessel abnormality seen in the skin can also occur on the surface of the eyeball and more importantly in the choroid, which is the dense network of blood vessels behind the retina, which supply the retina with oxygen. When these blood vessels are affected, we call this a ‘choroidal haemangioma’. It is important to identify this prior to any eye surgery, as there is an increased risk of these blood vessels rupturing during surgery and care has to be taken to avoid this very serious complication, which is known as a ‘suprachoroidal haemorrhage’. The most serious sight-threatening effect of SWS is glaucoma. Glaucoma is a disease of the optic nerve (optic neuropathy), which sends electrical impulses from the eye to the visual cortex of the brain, which processes vision. The damage to the optic nerve causes an appearance called ‘disc cupping’, which is always assessed to see whether the glaucoma is stable or progressing. The damage to the optic nerve, then causes visual field loss. Unfortunately, all visual loss from glaucoma is irreversible. The main aim therefore of treatment is to stabilise the condition and prevent any further visual loss. In childhood glaucoma, the major cause of optic nerve damage, is elevated eye pressure. In SWS, this is caused partly from an abnormality in the channels, which normally drain fluid from the eye and partly due to abnormal vessels, which restrict the drainage of fluid from the eye. When we assess glaucoma, we rely on the 3 most important factors, intraocular pressure (IOP) (see fig. 1), optic nerve cupping (see fig. 2) and visual field loss. Of course, assessing these factors in reluctant children can sometimes be very challenging! The classic triad of symptoms that children usually present with, which indicate glaucoma are photophobia (light sensitivity), blepharospasm (eye rubbing) and epiphora (watery eye). Other presenting symptoms are buphthalmos (enlarged eye), cloudy cornea, squint, reduced vision, nystagmus (‘wobbly’ eyes) and progressive Fig. 1. IOP recording with the myopia (short- ‘iCare’ tonometer sightedness). The treatment of glaucoma in children relies on lowering the intraocular pressure, by either medicine, laser or surgery. Medical treatment in the form of eye drops are usually the first line of treatment, as they are safe and free of the complications that can occur from surgery. Fig. 2. Optic nerve cupping

6 Sturge Weber newsletter It should also be mentioned that when eye pressure is controlled, it is equally important to correct any refractive errors, such as myopia and to treat amblyopia (‘lazy’ eyes). This often means patching the stronger eye for certain periods throughout the day, to improve the vision in the weaker ‘amblyopic’ eye. There are several different classes of drug that are currently available to lower eye pressure. Beta-blockers have been used for many years and they are very effective in lowering the IOP. Common examples are timolol, betaxolol and betoptic. They should however be avoided in children with a history of asthma, as they can cause breathlessness. Prostaglandins, such as latanoprost (xalatan), bimatoprost (lumigan) and travoprost (travatan) are very safe to use, with very few systemic side-effects but they can cause eyelashes to grow longer and may cause the eye and surrounding eyelids to look red. There are many drops that now combine both beta-blockers and prostaglandins in the same bottle, which helps to reduce the number of drops that need to be used each day, which is often challenging for parents and carers. Carbonic anhydrase inhibitors (dorzolamide (trusopt) and brinzolamide (azopt)) are usually ‘second line’ drops, which aren’t quite as efficient in lowering the eye pressure in children. Alpha-agonists are another class of eye drops but caution needs to be exercised in using these drops in very young children, as they can have very serious side-effects. Brimonidine (alphagan) should not be used in children below the age of about 6 years. Laser treatment (cyclodiode laser) is an effective treatment to lower IOP but the effects can be short lived and further treatment is often required in the long term. Surgery is usually needed in up to 70% of children who develop glaucoma in SWS. This can be either a traditional drainage operation, called trabeculectomy, or a shunt operation, which is my personal recommendation. The tube shunt diverts the aqueous fluid from the eye and keeps the pressure at a level to prevent any further optic nerve damage. The most frequently used tube implant in the UK, is called the Baerveldt tube (see fig. 3) The Baerveldt tube consists of a ‘plate’, which is sutured around the back part of the eye and a tube, which drains the fluid out of the eye, which is subsequently reabsorbed back into the circulation. The hope is that the tube stays in the eye permanently but occasionally, a tube might need to be removed because of infection, or further smaller procedures may need to be performed, in case the tube becomes blocked. My view is that the tube implant operation is less prone to infection and complications, such as ‘hypotony’ (when the eye pressure drops too low), than the traditional trabeculectomy and the tube surgery offers longer lasting pressure control, Fig. 3. The Baerveldt Tube than the trabeculectomy, although opinions vary amongst glaucoma surgeons. The main concern with any type of glaucoma surgery is that the eye pressure may drop too low, usually defined as less than 6 mmHg. The effect of very low pressure can be difficulty in maintaining the structure of eye, with retinal problems and particularly in SWS, with bleeding beneath the retina from the choroidal haemangioma. Therefore, when performing tube surgery in children, it is necessary to stop the tube from draining at all for the first few weeks after the operation. This is done by using a stitch, which constricts the tube and which takes about 4-6 weeks to reabsorb, at which point the tube hopefully then starts to drain safely. The other safety mechanism to prevent hypotony, is to leave a stitch inside the tube implant, which partially occludes the tube from excessive drainage. This stitch does not dissolve and if the pressure is satisfactory, stays there indefinitely. However, in the future, if the eye pressure does not lower sufficiently, or a lower eye pressure is required, this stitch can be removed under a general anaesthetic, although this is a very straightforward and quick procedure. All these precautions are done to prevent a pressure which is too low for the eye, which can be a major problem for children with SWS especially. Therefore, until the tube starts to function, glaucoma drops are used temporarily, to control the eye pressure until the tube opens up. Sturge-Weber syndrome remains a challenging disease for children and their parents, which can cause multiple problems, which all need attention. Sight-threatening problems, such as glaucoma need to be managed effectively to maintain a child’s quality of life and although this is a challenging eye disease to treat, most children can be stabilised and treated effectively with modern medication and surgical techniques and from a visual point of view can maintain quality of life. In the future, I hope we will be able to set up a specialist glaucoma clinic for children with SWS, which will not only provide a specialised clinical service but also look at research aspects of the disease, to enable us to provide the best possible care for children with SWS and glaucoma in the future.

7 Sturge Weber newsletter Sturge Weber UK- Online Store All of our products are produced by companies who supply merchandise to some of the biggest charities and high street retailers in the world; we aim to provide a large range of high quality products at an affordable price which all raise awareness of Sturge Weber syndrome and the charity. 100% profit from all sales go directly to Sturge Weber UK and we always aim to keep postage prices at a minimum. Back to School For the new school year we have the draw string PE bag made from water resistant fabric with reinforced corners, available in a choice of 2 colours and priced at just £6 each. We would like to take this opportunity to thank Isaac’s Mum, Louise Stimpson, for suggesting the bags and kindly organising the production of them. There are a range of Polo Shirts and Hoodies in either white or navy blue, prices from £9.99. We have a wider range of colours in the wristbands, still priced at £1 each but now available in White, Dark blue as well as Light blue, all featuring the motto “It’s not just a Birthmark”. Plus other accessories such as pens, trolley tokens and a pin badge, all priced at £1. Don’t forget Sam, the SW Bear priced £5. Many thanks to everyone who have placed orders, purchased products and helped advertise our store. We are also very grateful to those who have sold products on our behalf – If you’re planning on holding an event or own a business and want to sell some of our official merchandise then please email: [email protected] for further details. Many thanks once again to Steve Waters www.itsecpc.co.uk for developing and creating www.sturgeweber-store.org.uk and for continuing to donate his time and professional skills since it was first launched in 2012. Without the support of Steve and the families Sturge Weber UK Online store would not exist, so many thanks once again and we look forward to your continued support. www.sturgeweber-store.org.uk Lisa Massingham On behalf of Sturge Weber UK

8 Sturge Weber newsletter Brain Surgery to Reduce Seizures in Children with Sturge-Weber Syndrome

Researchers at the Peninsula Cerebra Research Unit (PenCRU), Childhood Disability Research unit in Exeter produce 'What’s the Evidence?' summaries. PenCRU receives queries from families about the research that exists surrounding specific therapies, treatments and other issues relating to childhood disability and produce an ongoing series of reports in response to those queries.

The reports are designed to summarise what is known on specific questions relating to childhood disability. They are a synthesis of existing research and are not new studies that they have carried out.

In 2015 I asked what evidence they could find about the effectiveness of different types of brain surgery for children with Sturge Weber Syndrome. I was thrilled when Hannah Morris, Associate Research Fellow at the University of Exeter contacted me in September last year to say they had prepared a plain language summary of what they found and would I let them have my thoughts on it.

The final report was published on their website in October 2016 and is available to download as a pdf here: http://www.pencru.org/evidence/brainsurgerytoreduceseizures/

What Were We Asked? A parent of a child with Sturge-Weber Syndrome and drug-resistant epilepsy asked us: ‘Which of the several different types of brain surgery is most effective in reducing seizures in children with Sturge-Weber Syndrome?’

Key Findings • Sturge-Weber Syndrome is a rare condition that varies in severity from person to person. • A range of surgical procedures can be used to reduce seizures, but this makes it difficult to compare approaches. • Current evidence suggests that disconnective brain surgery such as hemispherectomy and posterior quadrantectomy are likely to be effective to reduce seizures. • Future research requires more comprehensive follow-up and standardised ways to assess outcomes.

Antonia, March 2017 Calendar Once again I produced a calendar with some of my favourite photographs of 2016. I love looking through my pictures at the end of the year and choosing twelve for the calendar. This year I raised just under £400 including gift aid for Sturge Weber. I have a few trips planned for this year so I’m sure there will be some great photographs for the 2017 edition!

You can check out my photos on my website at www.petesphotoadventure.co.uk Peter

9 Sturge Weber newsletter Sturge Weber UK Treasurer’s Report Year ending 2015

Please see below a summary of the Charity’s accounts for the year ending 2015. Previous years are included for comparison.

£ 2010 2011 2012 2013 2014 2015 Receipts 5,205 24,358 34,697 77,535 48,987 39,930 Payments (19,657) (5,977) (30,348) (26,236) (17,655) (69,136) Surplus/(Deficit) (14,452) 18,381 4,349 51,299 31,332 (29,206)

Bank balance at 47,206 64,475 62,220 113,519 144,851 115,645 31st December

As at 31st December 2015, the bank balance was healthy and the charity was in a good position.

Just Giving was an important fundraising tool for the charity in 2015, collecting £11,500 plus £2,500 in gift aid. Sturge Weber UK was very fortunate to be nominated to receive a donation of £10,000 from UK Railtours Charities. In 2015 the charity was extremely fortunate that dedicated charity members, together with their relatives and friends generously donated their time, energy and skills to create and take part in events, raising £4,400.

People were very kind at a difficult time in their lives to think of Sturge Weber UK charity and a total of £2,600 was donated in 2015 in memory of loved ones. Income received in 2015 via Virgin Money Giving was £2,045. Donations received from our collecting boxes amounted to £1,300. £536 was raised during the Family Weekend from the raffle, donations and other activities.

Sales of Sturge Weber UK branded items in 2015 at fundraising events and through the online shop raised £550.

We are very thankful to Pam Stevens for arranging the printing and distribution of Christmas cards, this has been a substantial source of income for the charity over the years and a good way of raising awareness of the charity. However, the printing company has withdrawn their reduced printing rates and sadly we have been unable to find a comparable rate. Sales of the remaining cards in 2015 amounted to £142.50.

Other income came from donations, Charities Aid Foundation, Payroll Giving and Give as you Live.

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10 Sturge Weber newsletter

Payments from the bank account in 2015 amounted to £69,136. The charity’s major payments in 2015 were for hosting a successful Family Weekend and Conference (£21,500) and payments into restricted funds at Great Ormond Street Hospital to specifically support research projects run by the Sturge Weber and Neurocutaneous Service (£39,000).

Printing cost for the Newsletters was the next highest position for expenses in 2015, at £2,983. The Newsletter, together with the charity website and social media, serves as an important source of information and support for members between Family Weekends. Other expenses incurred in 2015 largely related to postage, trustee meetings, stationery, telephone and internet costs, insurance and Just Giving, PayPal and accountancy fees. Donations and fundraising events continued to be organised and processed through websites. Online shop transactions continued to be processed through PayPal.

The charity is run by volunteers, there are no paid staff. Speakers at the Family Weekend kindly offer their time unpaid. Travelling and subsistence costs for trustee meetings and Speakers at the Family Weekend are reimbursed. Between 2013 – 2015 the average annual running costs for the charity, excluding payments for research and for the Family Weekend was £10,917. Over the same 3‐year period Sturge Weber UK paid an average annual amount of £20,654 for the Family Weekend and Conference (held every 18 months). This was offset by receipts averaging £8,307 annually over the period (£14,968 total payments from attending families and, in 2013, a grant of £9,958 from Children in Need), bringing the annual expense for the Family Weekend and Conference between 2013 and 2015 to £12,347. Sturge Weber UK is a small charity not subject to statutory audit and has no reserves policy. At the end of 2015 the charity was well positioned to continue serving the interests of people with Sturge Weber syndrome and their families.

On behalf of people with Sturge Weber Syndrome and their families, thank you to everyone for all your donations and fundraising, it is greatly appreciated.

Antonia East, Treasurer August 2016

Fundraising T Shirts We have recently designed t shirts to be worn at fundraising events and marathons etc.

Here is a photo of Kelly and Natalie wearing them when they recently took part in the Great North Swim, with our logo on the back.

If you would like one for your next event, please contact Lisa, our Fundraising Co-ordinator. You can e mail her [email protected] 2 or contact her by phone 01263 577570

11 Sturge Weber newsletter Calling all supporters of Sturge Weber UK!

Hardly are the summer holidays behind us and we start thinking about Christmas. Your Christmas shopping for presents and treats for friends and family can help Sturge Weber UK. SW UK is registered with Payroll Giving, Give as you Live, PayPal Giving, easyfundraising and Recycle4Charity. Please take a moment to find Sturge Weber UK on these websites and follow their guidance on giving:

Payroll Giving: www.payrollgiving.co.uk/ It’s cheaper because its tax free ‐ for example, a donation of £5 per month costs the basic rate tax payer £4.00 (the taxman pays the rest!)

www.giveasyoulive.com/join/sturgeweberuk Raise free funds for charity, just by shopping online! Sign up and support any UK charity, shop as normal at over 4,200 stores, they donate to SW UK ‐ for free! For example, Amazon donates up to 1.5% of the purchase value. M&S, Expedia, eBay, Boots and John Lewis are just a few of the 4,200 retailers signed up to the scheme.

www.paypal.com/gb/givingfund/ You find charities through PayPal, eBay and more. Add donations to your purchases, donate a percentage of sales or give in other ways.

www.easyfundraising.org.uk

www.recycle4charity.co.uk Recycle your inkjet cartridges and mobile phones to raise money for Sturge Weber UK and protect the environment. It’s so easy, you just need to select Sturge Weber UK and register online. You can order freepost bags to return your items in, or even arrange for a box of wanted items to be collected, free of charge! You can even monitor your account to see how much you’ve raised and each quarter an automatic payment will be made to Sturge Weber UK.

Contact a Family Contact a Family have a wide range of resources on Money and Finance, Education and Childcare, Family Life, Behaviour, Health and Social Care Services. All their publications are free to family members who call their helpline 0808 808 3555 or you can download them free at www.cafamily.org.uk/publicationslist Need help to buy aids and equipment? Their guide to Aids, equipment and adaptions has information on how to get equipment and mobility aids to which your child may be legally entitled. There website will tell you more about the services they offer https://www.cafamily.org.uk/ and you can join their Facebook page https://www.facebook.com/contactafamily/

12 Sturge Weber newsletter Sturge Weber Syndrome Family Day We attended the SWS UK family week-end on the 23rd of Oct 2016 which was held in Coventry. Different teams from GOSH attended to support the families whose children have SWS or their adult members suffered from the condition. Our dermatology team comprised of Hilary Kennedy, our clinical nurse specialist, Clinical fellow, Dr Maanasa Palobaalu and me. We each presented a lecture which was warmly received. These were followed by the epilepsy team and the ophthalmology presentation. Each of us talked about our own field of work relevant to the families. My talk focussed on birthmarks, classification of Vascular Anomalies and laser treatments for children. I started with quoting an incidence of 80% occurrence of birthmarks of all new-borns (ref 1) followed by classifying different types of vascular anomalies. Vascular Anomalies are divided into two main groups, namely vascular tumours and vascular malformations. I concentrated on vascular malformations as these are relevant to the SWS group. VMs usually present at birth, have abnormal or dysplastic vessels, slowly progress over the years and can persist throughout life. Some are complex and therefore associated with other abnormalities for example, SWS, KTS, Proteus Syndrome etc. In the case of SWS a Port Wine Stain is present on the face usually the forehead or scalp, sometimes unilaterally and occasionally bilaterally on the face. If the eye is involved with the PWS, there is a risk of Glaucoma affecting that eye. Those children who have PWS on the forehead and on the scalp are also at the risk of epilepsy. The sequel of epilepsy was delivered by Dr Sarah Aylett in her lecture. The most common vascular malformation is a PWS with an incidence of 3 per 1000 with a female to male ratio of 2:1. Treatment is by laser therapy with early treatments showing better outcomes than those treated later in life. Those with stubborn PWS need more treatments and many times we use different approaches with lasers to improve the difficult and recalcitrant PWS. One such approach has helped another 20 % of children who have PWSs which are difficult to shift after the initial clearance.We have an objective method of using a siascope to measure the colour before and after laser therapy using multiple passes.(Ref 2) We found there is 10 to 11% further improvement by double passing of two different laser machines and using triple therapy in the same procedure. The Multiplex laser has 2 different wavelengths at 595 and 1064 nanometers while the Perfect V beam laser delivers at 585 nanometers. This work was presented at the British Medical Laser Association (BMLA) conference held recently in Manchester. There are other associations in patients who have extensive capillary malformations elsewhere on the body. This may present as an overgrowth syndrome, large limb or sometimes prominent veins draining from the malformation. Some genes have been identified for some of these conditions which was presented to this group by our clinical fellow who attended this meeting. At GOSH we offer laser treatments to all those children who are amenable to therapy. Multi-disciplinary team approach with other teams offers the best management for patients who have syndromic associations with their SWS. We strongly affiliate with the family groups and are happy to continue with supporting families who come to our hospital and those who continue care with the local hospital teams. Ref 1. Apler, J.C, Holmes LB. The Incidence and the Significance of Birthmarks in a cohort of 4641 Newborns. Ped Derm 1983; 1(1):58-68 Ref 2. BMLA : Syed, S. Laser Treatments in Children: Special Considerations. Lasers in Medical Science; Volume 32.(4):738.

Dr Samira B Syed Associate Specialist in Paediatric Dematology MBBS DCH DCCH RCPEd RCGP FCM BTEC Adv LASER DPD

13 Sturge Weber newsletter Family Weekend Conference 22nd, 23rd and 24th October 2016 This was the second time that we had held our weekend at the Hilton Coventry. The previous time was in 2003. The layout of the hotel conference rooms were ideal, with the crèche rooms all being together in a safe area. There were plenty of interconnecting bedrooms for families with two or more older children. Lisa and I stayed on Friday night so we could prepare everything with the help of Beverley, Lisa’s Mum and my son, Kerry. Saturday Saturday began with registration from 11am. The entertainers from Haven and Butlins were fantastic and occupied the children so families could chat together. After a lovely buffet lunch they entertained the children in the crèche rooms and to the surprise of the children they brought Rory along for a sing song and fun. The children were so excited. A big thank you to Dawn Macey for organising this. Karen Ray, Occupational Therapist was there all day for anyone who had any OT questions around equipment/independence aids. She brought a few small bits such as handwriting equipment and cutlery, as well as some hemi help leaflets and equipment catalogues. After lunch Dr Jenny Sloneem and Dr Imogen Newsom-Davis, Clinical Psychologists from Great Ormond Street Hospital’s Sturge Weber Team, gave a presentation to families on Sturge Weber syndrome and behaviour. Whilst this was going on Dr Gemma Wilson, Clinical Psychologist and Dalia Levy, Assistant Psychologist, ran a teen workshop for young people with SWS. Later in the afternoon Jenny and Imogen ran individual 20 minute behaviour problem-solving drop-in consultation slots for families. While the individual consultations slots were taking place Paula Harman and John Sutton ran a discussion group for families, so they could share their experiences and ask questions. Discussion groups are always popular and families often learn a lot from each other. Thank you Paula and John for organising this.

14 Sturge Weber newsletter Our evening meal was earlier this year and Mr Whoops entertained the children for an hour and a half before dinner. The children were able to have their meal a little before the Mum’s and Dad’s, in readiness for another hour and a half’s entertainment and disco with Mr Whoops. He was a fantastic entertainer and the children had so much fun doing the Conga and playing musical chairs. He was so kind and stayed on after to call out the raffle prizes in his own time. During the evening Elizabeth Chapman, Sarah Howard’s grandma and Beverley Massingham, Angelina’s grandma, kindly went around and sold the raffle tickets. Thank you both for giving up your time and raising a total of £400.05. Thank you to everyone who donated prizes for the raffle. One of Tom Tinsley’s contract managers kindly gave the charity a VIP pass to be auctioned that evening which went really well. Thank you John Sutton for your winning bid of £255.00. Thanks to Kate Husk who won the winning bid of £50.00 for the quilt and cushion donated by Steve Water’s Mum. Steve’s Mum made the quilt which was beautiful, thank you. The tables looked lovely on the night with a display of the charity balloons on each table. The children went to bed very tired dragging the balloons behind them.

Sunday After breakfast some of the children were settled in the crèche and the older ones were organised into groups by Tinies Crèche Company ready for their trip to Conkers. This was the first time that Tinies had cared for our children. All the nannies were so caring, so families could relax knowing they were in the good hands of Jayne Dainty and her team. We have used A-Line coaches for a number of years now and again they were excellent as they now know our children well. We cannot thank Tinies and A-Line coaches enough for safely taking care of the children. The Conference Day began with the AGM. As the trustees need to be re-elected every three years, it was only Antonia who needed to be re-elected as Treasurer this year. She was proposed by John Sutton and seconded by Paula Harman. This was accepted by everyone. Our first speaker was Mr John Brookes, Consultant Ophthalmologist at GOSH and Moorfields, who spoke about the Complications of Sturge Weber Syndrome and Managing Glaucoma. The second was Dr Samira Syed, Associate Specialist in Paediatrics (Dermatology) at GOSH, who covered the Classification of Vascular Anomalies and Laser Treatment. She was followed by Dr Maanasa Polubothu, Clinical Research Fellow to Dr Veronica Kinsler Paediatric

15 Sturge Weber newsletter Dermatology, who told us about the Genetic Cause of Sturge Weber and an Update on Current research. Before lunch Hilary Kennedy, Clinical Nurse Specialist Vascular Anomalies and Birthmarks at GOSH, spoke about Care after Laser Treatment. We then broke for lunch which was served in the main restaurant, The Larder. After lunch Dr Sophia Eriksson, Consultant Neurologist from the National Hospital for Neurology and Neurosurgery, spoke about Epilepsy. The last speakers of the day were Dr Sarah Aylett, Consultant Paediatric Neurologist at GOSH, who with Emma Ninnis, Epilepsy Nurse at GOSH, talked about Reducing risks in SWS, Managing headaches and MRI perfusion. The conference went well and thanks to Steve Waters who was on hand to make sure there were no technical hick ups. There was time to relax over delicious cake and tea before the children returned from Conkers. The evening began with Non Stop Kids who entertained the children for an hour and a half before dinner. During dinner and afterwards he performed Table Magic for the adults and of course the children enjoyed this as well. Jane Howard had organised some games for the children and as you will see by the photos, adults as well as children had great fun being wrapped up in toilet paper.

I think we can all agree we had a wonderful time at the Family weekend last year. Thank you to the committee for organising such an informative and friendly weekend. We put on some games for the children (and adults!) to play on the Sunday evening. Lots of silly things to do to keep the party going a little longer. We played ‘Pass the Parcel’ and ‘Mummy Fashion Show’, very messy but lots of fun. The children had such fun with the toilet roll we didn’t get to play any more games! We look forward to seeing you all next year for more fun. If anyone has any great ideas for evening party games for the Sunday evening don’t hesitate to let me know.

Jane Howard.

16 Sturge Weber newsletter Monday After breakfast on Monday the children were excited and attached their balloon tags, one on each balloon, ready for the balloon race. As it was close to the Charities’ Awareness Day on the 1st November the Awareness Day balloons were released. The children and adults assembled in the hotel garden and on the count of three they were released away up into the sky. Sadly they didn’t reach so far as other years. Danielle Lawton’s balloon went the furthest and was found on a farm on in Bloxham, Lincolnshire almost 100 miles away. Danielle and the finder of the balloon tag received Sainsbury’s vouchers. Isaac Stimpson’s balloon was the next furthest, although only found a few miles from the hotel. Isaac received Tesco vouchers so he could choose some toys that he liked. The person who found the balloon tag also received Tesco vouchers. Apparently the hotel staff were watching as it was the first time they had seen a balloon race at their hotel. I always contact the Civil Aviation Authority to make sure they are happy for us to release the balloons. On this occasion I also had to notify the Council and the Traffic Police the number of balloons we were releasing and the time. Some of you may not have known it was Ben Thow inside the SW mascot bear at the balloon race. We thank him for being talked into doing this for us and I hope he wasn’t too hot. It was then nearly time for lunch. It was lovely that so many families stayed and that some family’s friends who lived nearby joined us. There was still time to relax before saying our goodbyes and heading for home. The committee would like to thank everybody who attended the weekend and provided a useful feedback. Last but not least we would like to thank the speakers for giving up their time freely to come and give their presentations and answer questions. We look forward to seeing you all again next year. Jenny

17 Sturge Weber newsletter Frances’s Fun Day

We had a fantastic day thanks to the hard work and dedication of Frances Phillips. Thanks so much to all the volunteers and donations. We had everything -- Face Painting, hair braiding, tables for boot fair items, door prizes, fantastic raffle prizes, homemade baked goods, fabulous entertainment all day and Elsa and Arna Davador characters who photographed with the guests. We had “Guess the Bears name” of two of the Sturge Weber UK bears. A little boy called Noah won Stephen and other little boy won Beartie. We also had “Guess the baby’s name”. A little girl called Sophia won the Baby Princess Maev. Oh, I forgot -- we had grilled hamburgers and hot dogs also. We even had a Best Pet Competition. Monty won a well-deserved first place (Chris and Sonia Daughters), and second place went to Lucy and Ethel. Great fun!!!!! We raised a total of £605 50 for Sturge Weber UK. Carol Harrison

Darlington Community Carnival 2017 We attended the Darlington Community Carnival again this year on the 24th June 2017 to raise money and awareness for Sturge Weber UK. We had a stall which included a tombola, hook a duck and tin can alley. We also sold handmade cards, second hand books and garden plants. It was a family team effort, all helping with the tombola and kids games. Meghan even managed to stay all day, happily sat watching the day’s activities. It was nice to have Meghan sat on the stall as the public could see first hand how Sturge Weber can affect some children and adults. Meghan even managed a few hellos and goodbyes to the kind public who stopped to chat. The weather was very kind to us this year and stayed dry (unlike last year). It was a tiring day but definitely worth it as we raised a fabulous £244.16. I would like to say a big thank you to everyone who helped on the day and donated prizes. I couldn’t have done it without you. Thank you for reading. Mel Jones (Meghan’s mam)

18 Sturge Weber newsletter Chloe’s story On 16/03/2016 I gave birth to our beautiful daughter Chloe Rose weighing 9lb 3oz after a very long exhausting labour. Throughout my pregnancy baby Chloe was weighing bigger than normal to which I was checked for gestational diabetes which came back clear. I was told I had polyhydramnios which is excess water. I was induced on the morning of 16/3/16 due to this and the size of Chloe and at 6:22pm Chloe was born. Chloe was taken to neonatal for a tube to be inserted to clear her lungs to make sure there was no extra fluid. Whilst waiting to go up onto the ward a team from neonatal came down, as Chloe had a large red mark covering her face and neck. I was informed this could just be a birth mark and may fade gradually. The next morning we were visited by a paediatrician and he stated Chloe had a port wine stain and that this could cause many problems, epilepsy, glaucoma, weakness down one side of her body, delayed development etc. and that she would eventually need laser surgery to fade the stain on her face. Chloe saw an ophthalmologist who checked her eyes and said Chloe had a haemangioma on her right retina and could affect her eye sight later on in life. The first 3-4 months of Chloe’s life was amazing. She is a little bundle of joy and never cried unless she was hungry. On 10/7/16 Chloe was not quite herself she got sick 3 times on the morning and I noticed her breathing was not quite right. I took her to the nearest walk in centre and from here we were blue lighted in an ambulance to Heartlands Hospital. My heart sank. I was told this baby is not well. We were greeted by a team of about 10 doctors, nurses etc. Whilst in high dependency Chloe had a couple of seizures and apnoea moments between 10-20 a day. This continued for about 4 days until Chloe had an EEG and this confirmed Chloe had abnormal electric activity. Chloe was diagnosed with epilepsy and started her medication straight away. After 2 days on medication we were sent home and Chloe continued to improve and got her strength up. This didn’t last long and on 3/8/16 we were admitted back to hospital with more seizures. This was due to the amount of weight she had put on and the dose of medication needed to be increased. Later on 3/8/16 we were sent home and luckily to date she has been great. Chloe is our world and such a happy little character. Chloe has Sturge Weber syndrome and will have this for the rest of her life. Her epilepsy is well controlled with her medication. Chloe’s epilepsy seems to be coming from the right side of her brain and luckily this can be helped with surgery if needed as she gets older. Chloe will need extra help and many appointments with neuro surgeons, ophthalmologists, skin specialists etc. as she grows older, but she is doing great at 6 months old. She has an amazing bigger sister Ella who loves her dearly. We try our best to make sure Chloe is well and never in any pain. Natalie Dalton

19 Sturge Weber newsletter Raising Awareness for Sturge Weber in Italy with the England WTKA National Martial Arts Team After a fantastic family weekend in October we were fortunate enough to take Beartie and Beartrice, the Bears, to Italy, as we were heading straight there for Tegan age 10, her sister Yasmin age 7 and Dad Rick, to meet the rest of the England team who had qualified to represent their country at the 2016 world championships. After the success of the balloon race in England on the Monday morning we also decided to have a balloon race from our hotel the morning of the first day, which was a great way to spread awareness amongst the team, explain about the condition and how it can have an impact on each individual person, especially with Tegan as she has type 3, so no port wine stain. Unfortunately we didn’t get anyone sending the tags back, but we were happy, as were the kids to have something so fun to take part in before the intense competition ahead of them. The competition lasts for four days, three days of knockout rounds, then a finals day on the Sunday. There are over ninety countries who compete and it is attended by thousands of competitors. Tegan won a fantastic haul of two world titles and one silver medal! Not too bad for a 10 year old girl who was told when she was diagnosed aged 4, that she may not be able to continue to do the sport she loves. She was also a great support to Yasmin who won two world titles and a silver medal too, and Dad Rick who also gained a world title. As you can see from the photos, Beartie and Beartrice had a great time with the team watching and supporting the England team and even lent a hand on the judging table. Tegan, Yasmin and Rick have continued to train hard and enter lots of UK competitions and we are pleased to say that they have all qualified to represent England again in October 2017. Carolyn and Rick Burns Connie’s 90th Birthday Connie had a big birthday coming up and wanted to do something worthwhile. She decided that she did not want gifts as she said she already had everything she needed or wanted so she decided to ask her family to give her cash instead of gifts as she wanted to make a donation to a worthy charity. She chose Sturge Weber UK as her first charity. Next year she said she will choose another but has a year to think about which one. Connie turned 90 on 24th December, her family gave her a party so she could get together with all her family and friends and they came from far and near. She had a wonderful night. Connie raised £306. Jeanette Tinsley

20 Sturge Weber newsletter GOSH Team Workshops OnFundraising the Saturday afternoon for of the Sturge family conference, Weber Dr Jenny Sloneem UK in and memory of WhenDr Imogen my daughter Newsom-Davis Sian passed who awayare both after Clinical suffering Psychologists from Sturge from Weber Great Syndrome, I realised that the Ormond Street Hospital’s Sturge Weber Team, gave a joint presentation to Litz Butcher families that focussed on Sturge Weber Syndrome and behaviour. They began by thinking about what ‘challenging behaviour’ actually is (with examples ranging from ‘persistent shouting’ to ‘physical aggression’ and ‘destruction of property’). They went on to describe general causes of difficult behaviours seen in all children and young people and then described why people with Sturge Weber may be more at risk of displaying these behaviours, including the way in which epilepsy itself can influence how people behave. They went on to present ways in which families may understand any challenging behaviour that they see, and relay strategies that may be useful in trying to prevent and reduce any ongoing difficulties. Whilst this was going on, Dr Gemma Wilson (Clinical Psychologist) and Dalia Levy (Assistant Psychologist) ran a teen workshop for young people with SWS. They had a lot of fun and the teens really enjoyed getting to know one another and playing lots of games with a focus on positive thinking, managing worries and building confidence.At the beginning, the group played a Nerf Gun game where they chose positive thought bullets to fire at particular tricky situations. They moved on to thinking about everyone’s positive qualities such as strength, determination, bravery and kindness. Everyone chose a few qualities which described them best and thought about things like, ‘what has given us that quality?’, ‘who has talked about or noticed us having that quality?’ and ‘what we have done that shows that quality?’. The teens then used their positive qualities to play a board game which recreated a tricky day at school and everyone had to manage challenging situations and negative thoughts using their positive qualities. At the end the group designed a poster relating to their positive qualities and decorated it with pictures, words and phrases. Everyone had fun and it was a creative and thoughtful workshop! Later that afternoon, Jenny and Imogen ran consultation slots where families could meet with them individually to think through any behavioural or mental health difficutlies that were particularly concerning. The consultation slots were well received and familes reported finding them extremely helpful.

Joy’s 70th Birthday Celebration I recently celebrated my 70th birthday and had a party at the West Cheshire Sailing Club. My friend Mal King entertained us, the Crusty Cob provided the food as they were recommended by Danny saying, “it’s quality food Nan!” he was so right!! Family and friends came from all over the country and rather than have presents we had a Sturge Weber bucket available for donations at the party. Altogether with my salon’s draw at Easter we raised £620. Mike and I were so chuffed, so here is my letter “a bit of news”. Danny Grimes Nanny Frizzy Head. Joy Corlett

21 Sturge Weber newsletter What are the different types of Sturge Weber syndrome? There are 3 main types of Sturge Weber syndrome: Type 1 is the most common. The blood vessels grow in an unusual way (vascular malformation) on the face and brain. This can lead to seizures. The seizures usually happen before a child’s first birthday and can continue throughout their life. The child’s development may be delayed causing learning and physical disabilities. They may also have glaucoma, a condition that increases pressure inside the eye . Type 2 involves a port wine stain on the face. This type of SWS doesn’t usually affect the brain. It can lead to glaucoma, differences in blood flow and headaches. These symptoms can last into adulthood.

Type 3 often involves unusual blood vessel growth on the brain and no port wine stain and usually no glaucoma. Commonly referred to as forme fruste. Diagnosing can be difficult and it is often confused with other conditions. Doctors use brain scans to identify and diagnose this type.

Sturge Weber mummies respite weekend The SWS mummies respite weekend is a short break at the Manchester Christmas Market. It is a great opportunity to get together and feel that everyone understands the importance of a break from home without having to feel guilty. There is a very relaxed choice of activities. We can treat ourselves to a little luxury, some pampering in the spa, a wander around the Christmas Market, simply chatting, afternoon champagne tea, evening meal with disco, cocktails, super breakfast and more!

This year it is from Friday, 17th November to Sunday 19th November 2017. Stay for two nights, or just for one.

We stay at The Midland Hotel https://www.qhotels.co.uk/our-locations/the- midland-manchester/

Find us here: https:// www.facebook.com/ events/749529715205069/ Every SWS Mummy is very welcome!

22 Sturge Weber newsletter In Memory We would like to remember our Sturge Weber members who have passed away recently. Warren Van- Oestren passed away on the 20th June 2016 aged 34 years. Some of you will remember Warren’s Mum and Dad, Pauline and Sid Van- Oestren who for many years brought Warren to our Family Weekend Conferences. Maev Walsh, daughter of Gillian passed away on 15th April 2017 aged 26 years. Many of you will have been friends with Maev on Facebook. Maev lived life to the full and loved posting pictures on FB about the fun things she and her Mum had been doing that day. We all miss her posts. Maev and Gillian attended our Family Weekend Conferences and they haven’t missed a weekend in over 21 years. Maev loved to be involved and help at these weekends. The Family Fund The Family Fund are the UK’s largest provider of grants to low-income families raising disabled and seriously ill children and young people. They help ease the additional pressures families face. They can help with essential items such as washing machines, fridges and clothing but can also consider grants for sensory toys, computers and much needed family breaks together. They help families across the UK who are raising a disabled or seriously ill child or young person aged 17 or under. You can apply to the Family Fund if: You live in England, Northern Ireland, Scotland or Wales. You are the parent or carer of a disabled or seriously ill child or young person aged 17 or under. You have evidence of your entitlement to one the following: Universal Credit, Child Tax Credit, Working Tax Credit, Income-based Jobseeker’s Allowance, Income Support, Incapacity Benefit*, Employment Support Allowance*, Housing Benefit and Pension Credit. If you do not receive any of the above, further information may be needed to complete your application. Please only send photocopies of this information as we cannot return it to you. You have permanent legal residency in the UK and have lived in the UK for six months. Help from the Family Fund is discretionary and subject to available funding. The Fund also retains discretion to decline an application where a family has a significant level of capital or household income. Due to limited funding, they are unable to help all disabled children. They use their own disability criteria when establishing eligibility. To meet the Family Fund’s disability criteria, children and young people must have additional complex needs, or have a serious or life threatening illness. AND There must be evidence that the child or young person’s additional needs impact on a family’s choices and their opportunity to enjoy ordinary life. The degree of planning and support required to meet their needs must also be much greater than that usually required to meet the needs of children and young people. AND They must require a high level of support in three or more of the following areas: The physical environment Education Communication Access to social activities Personal care, supervision and vigilance Specialist resources, including Information and Communications Technology, required Medical or therapeutic treatment and condition management AND The child or young person’s condition must be long term or life limiting. By long term they mean lasting or likely to last 12 months or more. http://www.familyfund.org.uk/grants/how-to-apply

23 Sturge Weber newsletter We need your help Do you have 3 to 4 hours a week to spare? Do have any skills that you feel would be a help to the charity? For some time the charity has been run by three trustees who care for their children who have Sturge Weber syndrome at the same time as working outside the home. We need help with the day to day running of the charity. Below is a list of some of the tasks where we need extra trustees to help us. • Completing Grant Applications and approaching Companies and Trusts for raffle prizes using a sample request letter. • Help maintaining and monitoring our Facebook and Twitter pages. • The preparation of the newsletter. • Preparation of new leaflets. • Writing letters on behalf of the charity. • Publicity via the media, magazines etc. and medical journals. • Take minutes at meetings. The Committee (All Trustees) help with other tasks, such as the organisation of our Family Weekend Conferences and Regional Days. • Booking a hotel. • Dealing with the hotel booking forms completed by families. • Booking entertainers. • Searching and booking a suitable trip for the children. • Helping with registration at the Family Weekend. • Making sure everything runs smoothly over the weekend and helping with all the activities. As a Trustee it is important that you should have the necessary time and energy to devote to the charity. Checking e mails regularly and replying where necessary. All trustees need to be DBS checked and complete a straightforward online Child Protection Training course. If you are interested or would like more information about the role, please email [email protected] by the 24th November 2017. Jenny Cerebra Lending Library Cerebra have a popular postal lending library of books on topics relating to neurological conditions, media (DVDs) and sensory equipment, such as fibre optics and the ever popular Sensory in a Suitcase, which contains a range of equipment to stimulate all the senses. Anyone in the UK, (including NI), can borrow items from their library and it’s free to return them by using their freepost address for books or a courier service that they arrange for you for sensory equipment. You can borrow two books at a time and one sensory item for a month at a time. You can download a catalogue of the books and sensory equipment at https://w3.cerebra.org.uk/help-and-information/library/ or by calling them on 0800 328 1159 to request a paper copy.

24 Sturge Weber newsletter Charity night in Hallen Village Hall

On Saturday 19th November 2016 we held a charity night in aid of Sturge Weber Syndrome in Hallen Village Hall, Bristol. We had over 150 guests. We started the evening by introducing ourselves and explaining what Sturge Weber is, and how it is the condition our son Liam has. We held a silent auction throughout the evening which our guests could place bids on. Some of our auction prizes included a signed Body Coach book from Joe Wicks, signed Bristol Rovers football club t’shirt & football and Bristol city football club t’shirt and afternoon tea at a 4 star hotel just to name a few. We also sold raffle tickets throughout the night and held a raffle in which we had lots of amazing prize donations from lots of different companies and people including cinema tickets from Vue Cinema and Showcase Cinema and signed Noel Edmonds and Carol Vorderman books. During the evening we had entertainment provided by a Local DJ and we also had a Local singer, both of which were fantastic at keeping the guests entertained. We also had a buffet provided for our guests so they could refuel after all their dancing and singing. Towards the end of the evening we asked everyone to take a seat and announced if there was a beer mat in front of them that was a ‘blackthorn’ beer mat then they had a chance to take part in a ‘meal deal’ where they could pay £20 and in return receive a meal voucher, all of which were generously donated by local restaurants and hotels. This went down really well and we sold all 15 meal vouchers! We had a fantastic night and everyone commented how much they enjoyed themselves. In total we raised £2,487.60. We didn’t expect to make such a huge amount of money in one evening! Gemma and Rob Parsons

25 Sturge Weber newsletter Sturge-Weber family weekend, summary Adult Sturge-Weber/epilepsy services at the National Hospital for Neurology and Neurosurgery in London The adult Sturge-Weber patients are seen by Dr Sofia Eriksson, consultant Neurologist, at the National Hospital for Neurology and Neurosurgery at Queen square, around the corner from Great Ormond Street hospital in central London. Patients who have been seen at Great Ormond Street Hospital previously are usually seen in a transition clinic the first time. This is a clinic run jointly by Dr Sofia Eriksson, Dr Sarah Aylett and Emma Ninnis, clinical nurse specialist from Great Ormond Street Hospital. At this appointment, we normally go through the history, what investigations and treatments people The National Hospital for have had previously and of course also talk about the current situation and Neurology and Neurosurgery what epileptic seizures people may be having and what medication they are taking. This appointment is in general around 40 minutes and follow-up appointments are then shorter. The adult epilepsy team is large and some patients may see other consultants. In the team there are also three epilepsy nurse specialists; Doreen Patsika, Gohar Ghazumyan and Dmitrij Peretz. In case of problems between appointments, the epilepsy nurse specialists are the first port of call and can be contacted by leaving a message on the answerphone or sending an email. Doreen Patsika, Gohar Ghazumyan Although clinics are run from the National Hospital for Neurology and in their office at Queen Square Neurosurgery, some investigations are also performed at Gowers assessment unit at the epilepsy centre in Chalfont St Peter. Epilepsy An epileptic seizure is simply put a short-circuit of the normal electric activity in the brain and the type of symptoms you get will depend on what parts of the brain are involved during the seizure. Focal seizures, seizures starting in a small part of the brain, are most common for people with Sturge-Weber syndrome. Focal seizures are split into simple partial, where people do not lose awareness and complex where people do lose awareness. The symptoms during simple partial seizures will reflect typical of function in the brain regions involved. For example, seizures starting in the temporal lobe that is important for memory and emotions often include symptoms such as déjà-vu or feelings of fear. Movements are controlled from the frontal lobe and seizures starting in this area can involve jerking on the opposite side of the body. The parietal lobe looks after sensation and seizures starting here can include tingling on the other side of the body. Finally, seizures starting in the occipital lobe that looks after vision may give rise to a number of different visual signs that may be anything from colourful blobs to more complex symptoms. If the seizure activity spreads to larger part of the brain people may lose consciousness and may stop their activities, stare and sometimes there may be some chewing movements or fiddling. In the seizure evolves further to affect the whole brain there may be bilateral convulsions (jerking), so called generalised tonic clonic seizures (Secondarily generalised). Most relatives and friends to people with Sturge-Weber syndrome are very used to looking after people during an epilepsy seizure. Here are some advice from the Epilepsy Society (www.epilepsysociety.org.uk). 1. Stay calm. 2. Look around - is the person in a dangerous place? If not, don’t move them. Move objects like furniture away from them. 3. Note the time the seizure starts. 4. Stay with them. If they don’t collapse but seem blank or confused, gently guide them away from any danger. Speak quietly and calmly. 5. Cushion their head with something soft if they have collapsed to the ground. 6. Don’t hold them down. 7. Don’t put anything in their mouth. 8. Check the time again. If a convulsive (shaking) seizure doesn’t stop after 5 minutes, call for an ambulance (dial 999).

26 Sturge Weber newsletter 9. After the seizure has stopped, put them into the recovery position and check that their breathing is returning to normal.. Gently check their mouth to see that nothing is blocking their airway such as food or false teeth. If their breathing sounds difficult after the seizure has stopped, call for an ambulance. 10. Stay with them until they are fully recovered. Treatment of epilepsy Most people with epilepsy, including people with Sturge-Weber syndrome, are treated with antiepileptic drugs. It is important to take the medication regularly as stopping the tablets to quickly can sometimes trigger seizures. There are more than 20 antiepileptic drugs used in the UK and sometimes people need to take more than one drug to try to get control of their seizures. For people with focal epilepsy, Carbamazepine, Lamotrigine and Levetiracetam are often first line choices. In people where antiepileptic drugs do not stop seizures, epilepsy surgery is sometimes considered. To see this type of brain surgery is possible, a person needs to have a number of investigations such as MRI brain scan, neuropsychology assessment and prolonged video and EEG recordings. Investigations have two goals, the first is to clarify where seizures start and the second is to ensure that removing this part of the brain would not have unacceptable consequences. For people who do not become seizure free with medication and where epilepsy surgery is not possible, alternative treatment options include vagus nerve stimulator and the ketogenic diet. Women and epilepsy Many of the commonly used antiepileptic drugs interact with the oral contraceptive pill, making it less effective (such as carbamazepine, oxcarbazepine, phenobarbital, phenytoin, primidone and topiramate). Lamotrigine is the special case as the hormones in the combined pill can result in Lamotrigine being broken down more quickly. A person may therefore have less Lamotrigine in their system if they are taking the combined contraceptive pill. It is therefore important to remind the GP or family planning clinic what other medications a person is taking when discussing the most appropriate mode of contraception. All antiepileptic drugs we are using also increases the risks of malformations to the baby if the mother takes these during pregnancy. In general, the risk is increased from a background of 1-2% (in people taking no medication) to 3-4% for people taking one anti-epileptic drug. In people taking two anti-epileptic drugs the risk is further increased to approximately 5-6%. However, if the drug is Sodium Valproate the risk is much higher. The majority of these malformations may be surgically corrected such as small holes in the heart (atrial septal defects) or cleft palate. There may however be more severe malformations such as spina bifida were the spine is on the outside of the skin. The risk is widely believed to be reduced by taking 5mg of Folic acid (rather than the usually recommended 0.4mg) before becoming pregnant although the risk will not be reduced to background. Expectant mothers also need to have detailed foetal anomaly scans during pregnancy although these scans may not detect all malformations. For people taking sodium valproate there is also an increased risk of cognitive problems and autism and we recommend that women of childbearing age who might become pregnant do not take sodium valproate at all. Dr Sofia Eriksson Sturge Weber UK Awareness Day 2017 This year will be our fifth Charities’ Awareness Day on November 1st 2017, to raise awareness of Sturge Weber UK, but at the same time raising awareness of Sturge Weber syndrome. We chose the date on which Dr. William Allen Sturge was born in 1850, as he was the doctor who first discovered the syndrome. Dr. Sturge was the personal physician of Queen Victoria. He died in March 1919. We would appreciate your support leading up to November 1st to raise awareness in any way that you can. Perhaps hold a coffee morning or if you prefer, you can organise a cheese and wine evening. Last year our awareness candle was shared by 304 people on Facebook. A few days before the day we held a balloon race at our Family Weekend Conference on Monday 24th October. Awareness Day Facebook page. If you have a Facebook page please visit the Charities’ Facebook Awareness Day page : https://www.facebook.com/SturgeWeberAware/ and ask your friends to LIKE and SHARE the page too. Also pay a visit to the dedicated website: www.sturgeweberawarenessday.org/ Please follow us on twitter: https://twitter.com/SWCharitiesAD Jenny

27 Sturge Weber newsletter Caity’s Progress Jenny has asked me to write an update on my daughter Caity. Many of you will know her from our Family Weekends, but may not know her journey so far. So I will start with a short recap. Caity was born in 2001; the eldest of twins. She had her first seizure at 3 months old and spent most of her first year of life in hospital. In June 2002 Caity had a Left Modified Functional Hemispherectomy. Although it was a difficult decision, both Caity and I haven’t looked back. Caity is a wonderful young lady, she amazes me every day; she is kind, loving and caring. She enjoys Girl Guides and has become a Young Leader at the local Brownies group. Over the years she has taken part in concerts and dancing shows, locally and also at the O2, London. She has been an active member of her school Gospel Choir for the past 5 years. Right from the beginning I was adamant that Caity should wear her AFO leg splint, and her Lycra arm splint as much as possible. She was never given a choice, it just became part of our daily routine. These have worked well for her, although she has no active function in her right hand and arm, she is able to use them as a prop and as a “helping hand”. Her walking has improved greatly over the years, although she does trip and bump into things quite a lot. Caity’s behavior is still challenging at times, but we are working on this. Caity has had numerous laser treatments over the years on her PWS which have been hugely successful. We are looking forward to our first visit to the Royal Free Hospital to discuss what further options are available to her as she enters adult services. Like any teenage girl she loves experimenting with makeup and fashion. I took the decision to keep Caity in mainstream education. We are lucky to have an amazing school nearby that has a “special needs” department within the school. Caity accesses the main curriculum with the support of teaching assistants and benefits from dedicated 1:1 learning times. She has physio sessions at school every week, regular visits from the OTs and sensory needs. Caitlin has struggled with friendships at school, she has a very small group of friends, all from within the department, but sadly has struggled to maintain friendships outside of this. The next couple of months will be taken up with her GCSEs. She is trying her best in all subjects and I keep reminding her that as long as she tries her hardest then she is a success regardless of the grades! And so Caity is now ready to embark on the next stage of her journey. One that will lead her towards being more independent and gaining the skills that will help her in her adult life. In September she will start at the City College, Brighton, taking a foundation level vocational skills course. We are preparing the daunting step of transfer from GOSH to adult services. One that I think I am more anxious about than she is. Being a single parent - with little input from another parent - to a child with special needs is daunting at times, but I have had the great support of my parents, my elder children and the medical and education professionals both locally and at GOSH. Together we have done our best to give Caity every opportunity available to her over the years. It’s not always been easy, there have been mountains to climb and battles to fight, but there have been great times as well. I wouldn’t change a thing! I would encourage any family facing the possibility of surgery to investigate it fully. It has given Caity the highest quality of life I could ever have hoped for. Paula Harman July 2016 Fundraising In March I held a Clairvoyant Evening at Folkestone Railway Club and I would like to thank my clairvoyant friends Dawn and Paul Smith and Sue Ogilvie for the fantastic reading’s. A big thank you to Carol Harrison who came all the way from America to help make cakes to sell at Folkestone All Age Academy School. Everyone loved the American style brownies and thank you for the help at the academy for selling cakes and raffle tickets, and for all their support with my Channelle, as the teachers are all amazing. Also a big thank you to Nicholas Rolfe at Hunters Hairdressers in Dover for dyeing Siobhan Hayes rainbow hair and a big well done to Siobhan for putting out there, we can look different, but different is looking good. I would like to thank Folkestone Railway Club, Folkestone All Age Academy School and Hawkinge Kid Ease Nursery for supporting the events. Altogether we raised £383, which includes a £110 that Siobhan raised from dyeing her hair a rainbow colour. Frances Phillips

28 Sturge Weber newsletter Channelle’s Story Well, I have been bringing Channelle and her brother up for four and half years now and she wasn’t diagnosed from birth. That took a good couple of years of me taking her to doctors, health visitors etc. and saying something was wrong with her. It felt like no one took me seriously. She kept having fits and frothing at the mouth and making a clicking noise. The hospital told me that it was because she couldn’t control her body temperature. Still not being happy with that, I kept taking her back to the doctors and saying something is not quite right with her. She ended up freaking at the doctors surgery having a hypo fit. When asked by the doctor does she behave like this often? I said yes and with that I just cried and begged him to do something. So we were sent to a specialist who wanted MRI scans etc. done. This took a while to get sorted but once all done we had an emergency call saying I had to get her to the hospital as they had her results. Panic struck, to be told she had a rare condition called Sturge Weber syndrome. Ohh my God, I remember thinking what is this, what’s going to happen etc. He showed me and my husband, her grandad the MRI scan. He said the birth mark which is on her forehead is affecting her right side of her brain on the inside so on the outside it is affecting her left side, we do not have the experience here so she will have to go to GOSH. So we joined SW UK and the Facebook support group and I now do fundraising and as much awareness as I can. Our heath visitors now use Chanelle as an example so they know what to look out for, as they didn’t know before. We often get mentions on the school radio as my son has a show every Wednesday 1 to 3 on 105.9 Academy FM radio. When it is awareness month they have a shout out every morning for it. I also write stories for Channelle to take to school and share with her friends so that they maybe understand a little better. She is always Princess Channelle and lives in the land of not quite right but who’s perfect anyway lol. We have lots of adventures, what with hospital trips and why she doesn’t have friends, cos she can’t concentrate for too long as she has ADHD and she doesn’t understand feelings. But she can’t help it and also sometimes she makes inappropriate comments to people. I have also been known to have very difficult shopping trips. One day a lady came over and informed Channelle how pretty she was. The next thing I noticed she is shouting at her “get out of my face get out of my face”. She then picked up carrots and started throwing them at her. I left my trolley and came home to my husband without the shopping? Still, in the shop I told a dear friend of mine that I was devastated. She said with a smile, it could have been worse! How I asked? It could have been tinned carrots was her reply. So now if we are having a challenging day I always think to myself, ohh well, it could be worse, it could have been tinned carrots!! I hope this helps someone. Much love and light and healing thoughts and prayers to you all xxx Frances Phillips

29 Sturge Weber newsletter What’s that on your face? What’s that on your face? Is a children’s book that dad, Ashley Ide has written to help children understand what birthmarks are and that it’s OK for people to have them, as we are all unique in our own special ways. Some people are big, small, round, thin, are blind, or just have a different appearance. As a parent to his son Ashton, who has a bilateral port wine stain covering roughly 85% of his face, he knows what it’s like on a daily basis for his son. Especially on day trips to new places and when he first attends new places, such as school and this is why he chose school as a location in the book. The book would be a very useful tool for parents and teachers to help children with and without birthmarks to understand about differences and realise that not everybody is the same and that making comments can upset people. The book has a number of main characters that all are unique in their own ways including a very unique teacher. We can educate the next generation to be more accepting, our children and future children will be accepted and understood more. The book was launched at our last Family Weekend Conference and is now available on our on line shop priced £5.99. http://www.sturgeweber-store.org.uk/Books/ whats-that-on-your-face Printed by Dartprint www.dartprint.co.uk Designed and illustrated by JoLB - www.jolb.co.uk

Ashley and Ashton Ide, and Jo the Illustrator

30 Sturge Weber newsletter Raising Money for Sturge Weber Syndrome My son was born September 2016, and was quickly diagnosed 5 weeks later with type one bilaterally Sturge Weber Syndrome. He had his first seizure 3 days later. We have conquered a lot of challenges so far with Adam and our lives have changed completely, but with help of the Sturge Weber Charity and many others we have been able to get more support and information to help us along with this journey. Myself and my fabulous friend Dee therefore decided that we would try to raise some money for this wonderful charity and try to raise more awareness of this rare condition. So we got our trainers on and decided to run the women’s 10k in Glasgow. Training was challenging at times as Adam was unwell and in hospital for a period of time and I wouldn’t leave him, but we managed to get some practice in before the event. We had a fantastic day, at times we wanted to stop, but knowing how much support we had and what we were running for and for the donations we had received and with the help of our family and friends cheering us from the side lines, we completed the 10k in 1 hour and 10 minutes. We raised £1,385.00, and it was worth every penny. We were so pleased that we could give something back to this amazing charity. Louise Smith

31 Sturge Weber newsletter Petty Pool SWS Family Weekend Max and I were thrilled to visit the Petty Pool SWS Family Weekend on 14th June this year. Once again, Nicola Colenso and Rick Murray and the team at Petty Pool College worked hard to make it a fantastic experience. The long drive from the south coast to Petty Pool is worth it every time to meet the lovely families and children and young people with SWS After arriving, we settled in to one of the cosy cabins and set out to meet the others. The afternoon started with introductions from the Petty Pool team who guided the children and young people through the varied activities such as the zip-wire, archery, climbing wall, Jacob’s Ladder and many more.

Jacob: I really enjoyed the weekend and the BBQ. I spent lots of time playing football with Josh, it's my favourite sport. After a tasty lunch, we visited the small Eve: I had a great weekend, meeting up with all my friends. I animals did lots of the outdoor activities and the zip wire was my favourite. We had a great BBQ and then I slept in the tent with my friends. It's great to spend time with others who understand Sturge Weber

Syndrome The Pinata was a great “hit” with the children!

Seth said, "I loved the piñata and playing with the other children there - I Hallie said, "I liked the bunk beds in our really liked playing with Jimmy! I was brave and did house" meaning the log cabins. She also some of the climbing wall loved playing with and the zip wire" the other children

32 Sturge Weber newsletter Olivia said she enjoyed playing with Eve and the other big girls in the tent and also enjoyed having a go of the zip wire and the wall, I asked if she liked staying in the cabin she said she would like to sleep in the tent with the big girls. We know shethe looks bigger forward kids to seeing

There was a very moving tribute to Maev Walsh, who sadly passed away earlier in the year. Maev’s mum Gillian said a few words and pink balloons were released into the sky. The day was long from over and the adults settled down to chat while the children enjoyed roasting marshmallows around the camp fire. It was a super weekend and we are looking forward to next year already! Antonia & Max East.

Me and My Face – by a small child Don’t look away when you see me. But when Doreen and Peter, Don’t feel you can’t look and smile. who opened my closed eyes to see. I’m just the same as you, you know They said my face was a small part, and I’ve had my face for some while. 10 per cent of the whole of me!

I’ve come to be friends with my face you see. So look at me my dear stranger We didn’t get on for some years, and smile at me and feel fine. I didn’t want it spoiling my life. For me and my face get on well now, And I spent lots of time crying tears. for I learnt to love me and what’s mine.

33 Sturge Weber newsletter Beautyzone Salon Fundraising Last September we held another charity event to help raise funds for Sturge Weber UK. Once again we offered express treatments to our clients for just £5 and, once again it was a complete sell-out. However, this time we also held various stalls selling fantastic Christmas gifts; sold homemade cupcakes, and our clients kindly donated items for our tombola. The event proved very popular with both customers and staff alike. Amanda, a client here at Beautyzone, made Christmas Crackers with small gifts inside. These were loved by all who bought them and it’s something we hope to do again this year. On the evening we raised £805. Melissa’s Grandma and Granddad kindly donated £195 to bring the grand total to £1000. I would like to say a huge thank you to my amazing staff who gave up their free time, once again, to help me with the event and also to our wonderful customers who supported us: I couldn’t do this without them. Finally, a big thank you to Melissa’s grandparents for all their help throughout the year. Debra Farran (Melissa’s mum)

STURGE WEBER UK Christmas cards Unfortunately there were no Sturge Weber UK charity Christmas cards available in 2016 and I missed not being able to send them to friends and family. I’m sure lots of you did too! Jenny used to buy the cards for the charity from Otter House in Exeter, after shopping around various other companies for prices. They were even cheaper than a quote she had from the printers who print the cards for Royal Mencap. They were really kind and donated prizes for the National raffle SW UK held for many years and for the raffle we held at our Family Weekends,which were held every October at that time. https://www.otterhouse.co.uk/ Pam Stevens offered to take over organizing the Christmas cards 10 years ago and at first her father designed our cards. For a few years her neighbour, who then owned the printer Herald Chase, printed them free of charge. When her neighbour sold the company the new owner honoured this, but eventually started to charge a nominal amount until Herald Chase raised their prices so drastically in 2015 that it was no longer in the charity’s best interest to continue with them. Shortly after Christmas I contacted Pam who has always worked so hard looking after the Christmas cards, and she told me she was happy for someone else to take on the task. Pam also told me that Elisabeth Wilkinson, the talented artist who has designed the pictures is very happy for SW UK to continue to use her designs. Very kindly, Elisabeth doesn’t charge for this.We are deeply grateful to Pam and Elisabeth for their support. I went out to local printers asking them for quotes to print charity cards. One of them gave me a very reasonable price, which I presented to the trustees. Jenny asked DartPrint Ltd,who beautifully printed Ashley Ides’ book “What’s that on your Face”. Their quote was very close to the one I had found and it was decided to go with DartPrint. We are thrilled to offer lots of Christmas themed designs with a Christmas greeting inside and also neutral designs for use all year round, these will be blank inside for your own message. One of the designs will be by Jo LB, the talented artist who illustrated Ashley Ides’ book “What’s that on your Face”. Jo has kindly offered to produce one of Mikey, the main character in the book. The cards are ready and there is an order form in this newsletter. You can also see the designs online and they can be purchased from the charity shop: Christmas cards:- http://www.sturgeweber-store.org.uk/christmas-cards Blank cards:- http://www.sturgeweber-store.org.uk/accessories Of course, the cards will also be on sale at the Family Weekends. If you would like to sell cards at your fundraising events email [email protected] with details of your event and the cards you would like. Antonia East

34 Sturge Weber newsletter Christmas Cards 2017 We would like to thank Dartprint for designing and printing our Christmas Cards this year and Elisabeth Wilkinson for painting the designs and Maureen Richardson for the “Christmas Hello” card. We have some new designs this year. Jo Burnett who is the Illustrator of Ashley Ide’s book “What’s that on your Face” has designed a new Christmas card based on Mikey from the book “ Illustration of Christmas Mikey”. Also don’t forget we have “Love – in – a – Mist “ and “A walk through the bluebells” in memory of Stewart Kays as our blank cards this year. Please complete the form below or you can buy them directly from our on line shop:- Christmas cards:- http://www.sturgeweber-store.org.uk/christmas-cards Blank cards:- http://www.sturgeweber-store.org.uk/accessories

Please send me...... packs of Christmas cards at £3.00 per pack of ten (please specify which design) Please send me...... packs of “Love – in – a – Mist” or a “A walk through the bluebells” cards at £3.00 per pack of ten. Name...... Address...... Postcode...... Tel. Number...... Please help us by including a cheque with your order, although we appreciate if you are ordering for your friends we would expect payment later for a large order. If you wish to pay by bank transfer please ask for our bank details. Please make cheques payable to Sturge Weber UK and return to:- Lisa Massingham 2 Castle Close Gresham Norfolk NR11 8RH Telephone 01263 577570 e mail;- [email protected]

This card is from a painting by Elisabeth Wilkinson

35 Sturge Weber newsletter SW Away Day SW UK trustees were invited to the Sturge Weber Away Day on June 29th 2017. The SW Away Day is organised by the Sturge Weber and Neurocutaneous syndromes (SWaNs) team at Great Ormond Street Hospital, who run the Sturge Weber clinic for children. The meeting is an annual opportunity to review the work of the team and invite the views, suggestions and questions from SWUK trustees and charity members. It was great to see so many from the SWaNs team at the meeting: Dr Sarah Aylett, Consultant Paediatric Neurologist, Dr Jenny Sloneem, Higher Specialist Clinical Psychologist, Karen Ray, Occupational Therapist, Ricarda Tillman, Physiotherapist, Mark Heathfield, Clinical Nurse, Steve Rose, Speech and Language Therapist, Hannah Richardson, Registrar, Christina Hawkins, Specialist Speech and Language Therapist, Liz Peddie, Secretary, Dr Gemma Wilson, Clinical Psychologist, Dr Tang Fosi, Consultant Paediatric Neurologist and the SW UK trustees. First on the agenda was an update on the meeting SWaNs had held with their Quality Improvement Team in the morning where they had discussed process mapping. Next, we discussed the SW pre-clinic questionnaire, looking at ideas to improve the questionnaire to make it easier for busy parents to complete while still collecting all the information important to the appointment. The outcomes of the SW clinic appointments and the resulting report were discussed next. We looked at patient and family experience of the appointment, whether the recommendations in the report are being actioned locally, whether questionnaires could be completed using electronic media during the clinic and whether this would cause delays. The SW clinic would like feedback from parents and professionals on the impact of their clinic report. We also discussed how the SWaNs database can provide information on stroke-like episodes, seizures, headaches and epilepsy surgery. The next focus was the clinic report, looking at the size and level of detail in the report and whether the language was accessible for both families and professionals. We discussed whether a section of the report could usefully be devoted to the impact of the child’s condition on their education. SWaNs have identified a need for the clinic capacity to increase, for example: assessments of social communication abilities, autism spectrum disorders and closer monitoring by physio- and occupational therapists of children who have experienced episodes of acute weakness. Improving a managed transition of young people to adult services is in discussion. Patient follow-up is an area needing closer focus. Patients that have not been followed up have been identified and a new system (e-COF) is in place to ensure no subsequent follow up losses occur. Next followed an update on an ongoing project, an Audit of Children with Hemiparesis, using data extracted from the database which SW UK supported through funding. Retrospective data (September 2013 – September 2016) extracted from the database provided baseline demographics, medical history and hemiparesis data. • About 33% of people with SWS have a hemiparesis • About 56% of people with SWS who have not had a brain operation develop a hemiparesis • There is not much data on transient hemiparesis, i.e. cause and prognosis. The analysis of hemiparesis data for this project encompasses:

• Relationships between learning difficulties, permanent or transient hemiparesis, epilepsy • Correlation with left or right hemiparesis and the probability of developing a hemiparesis • Cause of hemiparesis – seizure/blow to the head/fall. Outcome – there is still much work to be done on the subject of hemiparesis.

36 Sturge Weber newsletter After the hemiparesis project update we discussed topics brought to the meeting by SW UK. Some of you might have seen these responses which Jenny kindly posted on the SW UK closed Facebook page, but here they are again for the benefit of those who haven’t seen them yet: “My query would be around appointments. I have suggested to them before that before just allocating and posting out all the paperwork for an appointment they should phone/email the parent /carer to check if it’s convenient. Would save on wasted money, time and effort if they were agreed before being sent out. I’d also be interested in finding out what systems they have in place for ensuring follow up appointments are made as planned and don’t get missed as it appears some children get forgotten about.”

• This was covered in detail earlier in the meeting “We have just learned that our daughter has Klippel Trenaunay syndrome as well as Sturge Weber. Please could you ask how many known cases there are with both syndromes.” • The dermatology department would be the ideal place to ask this question. Veronica Kinsler is studying the genetics of KTS – looking at the possible genetic link between KTS and SWS “Could you ask if Epilepsy meds make the bones/ muscles weaker or is this part of STURGE Weber syndrome?” • There is evidence that a lot of people have low vitamin D levels which affects bone density. SWaNs recommend that children taking epilepsy medication should have a blood test to check their bone profile to see if they have a sufficient level of Vitamin D and Calcium Phoshate about twice yearly. Children under 5 should routinely take multi vitamins and/or a vitamin D supplement, be careful not to overdose. Many children with SWS have hypermobility which can affect bone/muscle density. People in wheelchairs, not weight-bearing, are likely to lose bone density and should also have a blood test to check their bone profile to see if they have a sufficient level of Vitamin D and Calcium Phosphate. “I was wondering if there are any large surveys planned to understand SW more? Maybe looking for common factors now that big data is getting used more and more.” • The database which SW UK helped fund means audits can be planned and carried out effectively. Current projects are the Hemiparesis audit and a behaviour and social communication study. As well as the SWaNs team, MSc and BSc students can use the data for research projects. “All studies and articles I have seen so far have such a small sample size. 20 patients etc. so conclusions seem to vary massively depending on what patients they saw. It feels there might be unknown or unquantified common factors.”

• The database is continually updated as more data comes in from patients with SWS, so the pool of participants and their data is growing. There are currently around 60 patients on the database. “Several in here said they got high likelihood on the downs screening during pregnancy. Several of us felt really rough during pregnancy (I actually fainted). One of the mum’s had radiotherapy when she was young and I have taken radioactive dose too. Some of these might be sheer coincidence but there might also be common factors that are overlooked.”

• There is not much known about this. There is currently no evidence that these factors could cause SWS. “Then there are all the facets to the illness discussed in here. Glaucoma risk (and how that relates to the size and location of the birthmark), the different lengths of limbs etc.” • Glaucoma is linked to the presence of a birthmark and John Brooks is the one to ask about this. He is looking into such links between the birthmark and glaucoma. The limbs where SW patients also have KT would be of different size and also due to those who have hemiplegia. Finally, there was just time for brief discussions on various topics including an update on the perfusion study, the Professional Conference (mentioned elsewhere in this newsletter), hemiplegia leaflets, the SWS Book and transition work. It was a very productive meeting. We all came away brimming with ideas and enthusiasm. We are immensely grateful to the SWaNs team for their continued interest in SWS and their willingness to share information and expertise for the benefit of people living with SWS. Thank you to Jenny for informing people on the SW UK closed Facebook page about the meeting. Thank you to Litz for taking the minutes and Antonia and Jenny for their contributions to the final version. Also to Lisa for her insightful and valuable contributions to the discussions during the meeting. We are looking forward to the next meeting in 2018.

The SW UK Trustees, July 2017

37 Sturge Weber newsletter Melissa’s Story Melissa’s story really begins long before she was born. Back in September 1988, I gave birth to a lovely baby boy who we called Liam. However, in just over a week he was diagnosed with a congenital heart defect. He soon became seriously ill and consequently required several operations. Liam’s life support was switched off in February, 1990. I became pregnant with Melissa later in the same year. Because of my history, I asked for tests and a detailed scan to eliminate the chance of me giving birth to another baby with a heart defect. The scan, carried out at Manchester’s St Mary’s Hospital, revealed non-immune hydrops (fluid in at least two body compartments) and ascites (abdominal fluid) in the foetus. Throughout the duration of my pregnancy a scan was carried out every three weeks. Although ammiocentesis showed no chromosomal abnormalities, the consultant suggested that perhaps the foetus had a cold. Furthermore, he said that any excess fluid would be drained from her lungs and stomach on planned delivery. Melissa was born with a team in attendance (including a paediatrician), on the 20th March, 1991. When our beautiful daughter was placed in my arms I was so full of love for her, but straight away I noticed that she had deep purple marks on both sides of her face (we later learnt that they covered a large proportion of her body). The midwife tried to dismiss my worries suggesting that they were just bruising from delivery. I wasn’t convinced. We gave Melissa her first bottle and her grandparents got to meet her before she was taken to Special Care to assess the extent of the fluid ascites. My husband, Ronnie, went to the unit a few hours later to see how things were progressing. He was given a photo of Melissa to bring to the ward for me. However, the paediatrician had taken him aside and told him that Melissa had had a seizure and further investigations would be needed. She was just six hours old. Over the next couple of days the Intensive Care Team tried to stabilise Melissa’s condition so that she could be transferred to the care of Dr Richard Newton at Booth Hall Children’s Hospital in Manchester. When we eventually had a meeting with him we were given the devastating news that she had a rare condition called Sturge Weber Syndrome – a syndrome about which, in the 1990s, there was little information. However, we were told enough to realise that the outlook was bleak. Just when we thought that things couldn’t get worse, the doctor went on to inform us that, due to the extensive brain damage, she would never walk, talk or feed herself – nor would she even recognise us. Our world fell apart. Early signs showed extensive bilateral port wine stains, epilepsy and weakness down her right side. When she was eventually allowed home, we were determined to get her as much help and support as we could. Melissa had physiotherapy twice a week and was given a tiny splint for her hand in order to bring her thumb into line. As she got older speech therapy was eventually introduced. Life for us was tough. Melissa’s granddad, my Dad, at the time worked with adults with learning disabilities. He told us after the initial diagnosis of her capabilities (or lack of) to think of her brain as a computer. If we input nothing we’ll get nothing out, so we should give her as much input as we could for her to benefit. Those words have stuck with us and we think of it as the best advice we’ve ever been given. We spent endless hours playing, talking and teaching. She had delayed learning and very limited speech - but she was learning and she was talking. When she started school at four years old her seizures continued to be very hard to control. At six she began to walk unaided and was out of nappies day and night. Melissa made huge progress at school. However, it must be said that there were issues with her behaviour: no doubt a result of her frustration and her medication. It also must be said at this point that Melissa is a very popular person. She is well liked by all who know her. Melissa also has a wonderful sense of humour and is often extremely funny. She has a good social life and is very fashion-conscious. Melissa also likes music and quite often sings along to the latest pop-songs (particularly in the car). Although she has some degree of difficulty with most things, she has shown some remarkable abilities. Even before she could walk she could quite easily do wooden shape puzzles, and enjoys doing jigsaws to this day. She also has an uncanny space awareness. She has been able to work out where her home is from where she hasn’t been before. It was while on holiday in Majorca, when she was fourteen, that Melissa suffered a debilitating seizure. She was rushed to a private hospital where doctors, unsure about her condition, liaised with her consultant back home. It took almost forty-eight hours to get her seizures under control. In the meantime she had gone into status which caused further damage that put her development back considerably. It was probably the most worrying time we’ve experienced with her. Melissa remained in a special school until she was nineteen. During that time both physio and speech therapies were continued. However, her seizures proved difficult to control. The consultants tried endlessly to find the right medication and dosage, and over those years we witnessed many types of seizures. Fortunately drop attacks have now become less frequent and have been replaced with complex partial seizures. But her severe headaches are regularly troublesome and difficult to eliminate. As yet we’ve been unable to find the right

38 Sturge Weber newsletter medication. Furthermore, Melissa’s left leg is now twice the size of her right one and we have asked to see someone again regarding this. She was last seen about four years ago when it wasn’t so big. It was during her time at school that she became close to a boy named Aaron and after twelve years of dating they got married with a huge ceremony in June last year. At the evening reception, her father sang to her an emotional song that can be viewed on YouTube (“I loved her first, father sings to daughter with learning difficulties”). As parents we couldn’t have been prouder. It was a wonderful day and despite her disabilities we could see that she had achieved so much. Because Melissa and Aaron can’t live independently, we had an annexe built in the garden so that we can always be there to help and support them. They both go to college four days a week on a life skills course and although Melissa has made progress there she can still only manage to make cereal and toast independently - therefore support is always needed at mealtimes. Also, Melissa still needs help with her personal needs as well as everyday chores. Even though Melissa and Aaron are so happy to be married, it has been a huge change for her and she has struggled at times. Her new situation has caused her obsessive-compulsive disorder (OCD) to resurface. It was something she suffered as a youngster. She now feels she has to use all of whatever she uses – hand soap, toilet rolls, deodorant, tooth paste, perfume etc. As a family, this has become difficult to deal with – as well as expensive. However, professionals are involved and are now trying to help her. Even though we’ve experienced problems since the wedding, many of which will no doubt be due to them settling down to their new lives, as parents, we’re still convinced that we’ve made the right decision in allowing Melissa and Aaron to have a future together. Debra Farran

Independence Equipment Thank you for welcoming me to my first Sturge Weber UK family day. I set up a stall with information about equipment that children can use to support their independence in a range of daily activities. I provided information about seating, computer access and dressing among many other things! Children came to try out equipment such as pen grips, adapted scissors and cutlery. Non-slip mats (Dycem) were a popular item as they can be used to stabilise things such as paper, toys and kitchen utensils. Families also took away information about charity funding for equipment. Please see some useful links below: General advice on physical disability and strategies for daily activities http://www.hemihelp.org.uk/ https://www.scope.org.uk/ Equipment sources http://meru.org.uk/ http://www.fledglings.org.uk/ https://www.pattersonmedical.co.uk/ Charity funding for equipment http://w3.cerebra.org.uk/ http://www.elifarfoundation.org.uk/ http://www.newlifecharity.co.uk/

Karen Ray, Occupational Therapist Sturge Weber and Neurocutaneous Service, Great Ormond Street Hospital

39 Sturge Weber newsletter Fundraising We have been asked by a number of people for some ideas and tips on fundraising. We have a fundraising pack available which Lisa can send you. We are registered with Just Giving, so if you are holding an event or taking part in a marathon you can set up an events page and for those who pay tax, Just Giving will claim back the Gift Aid on our behalf. You can set up a personalised fundraising page at JustGiving http://www.justgiving.com/sturgeweber Or here at Virgin Money Giving http://uk.virginmoneygiving.com/charity-web/charity/finalCharityHomepage. action?charityId=1006974 We also have ready designed Sponsor Forms if you would prefer to raise money this way. Perhaps you would like to hold a coffee morning, hold a raffle or turn a special celebration into a fundraising event for the Charity. If you are holding a raffle, we can send you Sam, our Sturge Weber Teddy Bear as a prize. We have collecting tins that can be placed in shops and clubs. For more information please contact:- Lisa Massingham 2 Castle Close Gresham Norfolk NR11 8RH Telephone 01263 577570 e mail;- [email protected] Thank you for considering to fundraise for our Charity. Without people like yourself the Charity wouldn’t be able to continue the work of supporting families who have children with this syndrome and fund future studies into the syndrome.

Collection boxes Earlier this year we re-designed the label for our collecting tins as we had changed our name to Sturge Weber UK, dropping the “Foundation”. Paul from Express Printing kindly donated the cost of the production of the new labels. Collection boxes not only help to raise vital funds, they also create awareness of our important work. Your small change can make a big difference. Collection boxes at work: You could ask for permission to display a collection box in your work place or any local business within your area. Collection boxes at home: Did you know that as a country we have £345 million in loose change in our homes, down the back of our sofas and in our cars? Order a collection box today and put your pennies to good use. Collecting in public: If you are planning to collect on the street or any other public place, there are a number of guidelines that you need to follow. Please see our Fundraising guidelines (included in the pack) - keeping it safe and legal for further information. Submitting funds and returning your box: Once your box is full, sending in your donation is easy. You can either:- make an online donation send us a cheque pay the donation into our bank All the information you need to do this is provided on the collection box remittance form. Please fill in the details required on the remittance form and send back to us so a letter of thanks can be sent. Many thanks to everyone who has raised money through our collection boxes and to all the businesses who have displayed them. To request a collection box please contact us:- Email: [email protected] Telephone: 07706 951188

40 Sturge Weber newsletter German Sturge Weber Family Weekend 2017 Once again, I attended German Sturge Weber group at their annual Family Weekend and AGM in June this year. I have been a member of the German charity since Max’s birth in 2002. The group is the second largest and most active Sturge Weber group in Europe behind SW UK (we’re still in Europe!). They were an immense support for us in the early months following Max’s diagnosis and through his operations and treatments. It is so nice to meet up with old acquaintances and see the children and young people growing up and also to meet new members of the group. Like last year, the Family Weekend was held at Vogelbergsdorf in Herbstein. The venue is perfect for such an event. A short drive from Frankfurt Airport, there are comfortable holiday chalets for the families, plenty of room for the conference and meetings, spacious dining rooms serving delicious breakfasts and meals and a well- stocked and very reasonably priced bar. There is plenty of countryside for walking and relaxing, lots of play spaces in the grounds for the children and nearby attractions to visit. As with our SW UK Family Weekend, the children and young people were looked after by trained and qualified carers hired by the charity while parents and older children sat at the conference. There were lots of activities planned for the children. For their main event they went on a bus trip to a local play area. The formal AGM was first on the agenda and the committee members were re-elected. Next followed a talk by Andreas Meyer on the implementation of the UN Convention on the rights of persons with disabilities. Andreas explained changes to the German “Bundesteilhabegesetz”, the Federal Participation Act and the “Pflegestärkungsgesetz”, frameworks which strengthen the options of persons with disabilities to plan and lead their lives in line with their personal preferences. Next, Dr Axel Panzer spoke about the importance of maintaining optimal medical support during transition from children’s to adult services. Following a super lunch and time to chat and socialize, the group split to talk about themes such as post-16 opportunities and siblings’ strengths and needs. The evening began with a barbecue on a most enormous grill. We enjoyed the balmy evening sun, filling up on sausages, Bratwurst or steak with potatoes and salad and a tasty vegetarian option of grilled goat’s cheese with herbs and baked vegetables. The children enjoyed face painting, a disco, giant balloons and much more. The evening’s entertainment was refreshingly simple and very good fun – trustee Martin Quack played his guitar for a sing-along and we played games and quizzes and chatted until the early hours. After breakfast on Sunday there were more discussion groups until the midday meal followed by a closing round of Q&As, feedback on the weekend and suggestions for Family Weekend 2018 speakers and activities. Yet again it was a super weekend. It was lovely to meet old acquaintances and great to hear their enthusiasm and ideas for improving the lives of people and families living with Sturge Weber Syndrome. Antonia East

41 Sturge Weber newsletter Sturge Weber UK Family Weekend Conference 5th, 6th and 7th May 2018 This year’s Family Weekend Conference will be held at The Nottingham Belfry. The hotel has 120 spacious bedrooms, an indoor swimming pool, a relaxing sauna and steam room and six spa treatment rooms. The Nottingham Belfry is situated one mile away from junction 26 on the M1 motorway. The nearest train station is 5 miles away in Nottingham. SATURDAY MORNING Saturday Morning will begin with registration and coffee will be from 11am with entertainment for the children. A buffet lunch will be at 12.30pm followed by workshops in the afternoon. There will be crèche facilities in the afternoon for the children and time for a swim before the evening meal. SATURDAY EVENING Registration will be from 5.30pm for those arriving later in the afternoon. There will be an entertainer for the children at 5.30pm giving time for families to relax and socialise before dinner at 7.00pm. The entertainer will again occupy the children until 9.00pm. Since Sunday is always a busy day, Saturday evening is a good opportunity for everyone to socialise. SUNDAY Registration will be at 8.45am for the children going on the trip and those staying in the crèche. Tinies Mobile Crèche will be looking after the children again this year. A suitable trip will be arranged for the children. There will be crèche facilities in the hotel for the very young children, those who are vulnerable and the ones who do not wish to go on the trip. While the children are having fun the parents and carers will have the opportunity to listen to the talks on different aspects of the syndrome. Coffee/tea will be served for the parents and visitors and registration for those attending just for the day. A carvery lunch will be at 12.30 in The Lawrence restaurant. The day will begin with the AGM, followed by the speakers. Dr Veronica Kinsler, Consultant Paediatric Dermatologist at Great Ormond Street Hospital, who unfortunately couldn’t be with us the last time has agreed to come and speak this year. Some of the subjects that will be covered are Sturge Weber syndrome, Maxillo Facial/Dentistry and Behaviour. SUNDAY EVENING Sunday Evening will begin at 5.30pm with entertainment for the children. Families can relax for an hour and a half while their children are being entertained until dinner at 7.00pm. There will be an entertainer for an hour and a half after dinner and Jane Howard is organising more fun again until the children are too tired and go to bed.

42 Sturge Weber newsletter MONDAY As the children enjoy the Balloon Race we are hoping to organise one again on the Monday morning. Since it is the May Day Bank Holiday Monday there will be lunch served in The Lawrence restaurant at 12.30 so families can socialise a little longer.

I have included some pictures of the Nottingham Belfry and some photographs taken at our Family Weekend Conferences between 1996 and 2005 and you can see how the children have grown. This was before Health and Safety when we had our own Little Tyke toys and houses which the company donated to the charity, thanks to Dawn Macey. Also one of the football games donated by Argos. On the Saturday evening the children had so much fun as the toys were at one end of the room during and after dinner, then in the crèche during the day.

The Committee look forward to seeing you all again and especially our new members. Jenny

43 Sturge Weber newsletter SVB UK – Three Peaks Challenge – 27/28 July 2017 On 27th and 28th July, a team of 21 colleagues from Silicon Valley Bank UK took on the Three Peaks Challenge, a 24-hour endurance test on the three highest mountains in Scotland, England & Wales. The team was led by Ryan Phayer, whose son Sam (1) was diagnosed with Type III SWS in January 2017 and underwent hemispherotomy surgery in April 2017. The objective of the challenge is to climb each mountain as quickly as possible before driving straight to the next one and completing all three in as close to (or under) 24 hours as possible.

The team set off around 3pm on a sunny Thursday 27th July at the foot of Ben Nevis, and reached the summit about 4 hours later. After a few photos at the summit, the weather set in and several teams took much longer than anticipated descending the mountain. With the light all but gone and rain setting in, the stronger climbers, already back at the bus, kitted up and headed back up the mountain to bring everyone down safely, finishing at around 01:00. Next, Scafell Pike awaited us, but due to adverse weather conditions and on the advice of the local mountain team and our drivers, we were forced to abandon the attempt at Scafell Pike, and headed straight on to Snowdown.

With many of the team having suffered injuries on Ben Nevis, the group wearily set off in horrendous conditions. Visibility was poor, the wind was strong and rain lashing down. Some 3.5 hours later the team summited Snowdon and started the descent. One call to mountain rescue and a few hours of trekking later and the team all made it back safely.

It was a phenomenal effort from a group of entirely novice hikers, and we were delighted to be able to raise £14,017.19 for the charity (inc. Gift Aid). Moreover, the Silicon Valley Bank Foundation Board decided to award a grant of a further £5,000, and the Gowling WLG Charitable Trust, contributed an additional £500 to the total. The total amount raised to date is £19,517.19 – well over our initial £5,000 target.

At one point during July, the team’s Just Giving page even made it into the top 1% most active pages on the whole of Just Giving!

Ryan Phayer

44 Sturge Weber newsletter Who can claim Carer’s Allowance? You may be eligible for Carer’s Allowance if you: • spend at least 35 hours a week caring for someone • care for someone who receives Attendance Allowance, the middle or higher rate Care Component of Disability Living Allowance, the daily living component of Personal Independence Payment (any rate), Armed Forces Independence Payment or Constant Attendance Allowance • don’t earn more than £116 a week (after deductions). Money you get from personal or workplace pensions doesn’t count as part of your earnings • aren’t in full-time education. You can still claim Carer’s Allowance if you’re getting a State Pension, but the rules are slightly different – see below. Sometimes, claiming Carer’s Allowance can affect the benefits of the person you care for. Get advice if you think this may be the case. How much is Carer’s Allowance worth? Carer’s Allowance is paid at £62.70 a week. If your State Pension is more than £62.70 a week, you won’t actually receive Carer’s Allowance. This is because these are ‘overlapping benefits’ and you can only receive one at a time. Instead, you will have an ‘underlying entitlement’ to Carer’s Allowance. This means that you’re recognised as a carer, but you can’t be paid Carer’s Allowance. This underlying entitlement means you will receive more money with any means-tested benefits you receive, such as Pension Credit or Housing Benefit. This extra money is called a Carer’s Premium, or a Carer’s Addition if it’s paid with Pension Credit. If you’re not currently eligible for these benefits, you may now find you can claim them. So it’s worth applying for Carer’s Allowance, especially if you’re on a low income. If your State Pension is less than £62.70, then you can receive Carer’s Allowance to top it up to this amount. This rule applies to certain other benefits too, such as Incapacity Benefit, contribution-based Jobseeker’s Allowance and contributory Employment and Support Allowance.

In memory of WARREN VAN OESTREN 5th January 1982 – 20th June 2016 I have known Warren from when he was five years of age and I was working at a respite care home for disabled children. When he was eighteen years of age he came to a day opportunities centre called “The Exchange” where I was now the manager and to my delight, working with Warren again. Over the years Warren had developed into a very knowing young man. It was wonderful to see how he had progressed. It was an absolute delight to see a smile, or observe how he would turn his head and listen intently when you were talking to him. When you heard him chuckle it made you feel like you had won the lottery. Warren had a lovely personality and a marvellous dry sense of humour. He liked nothing better than when things were chaotic in the centre with lots of hustle and bustle and loved it when other people were shouting and screaming. He liked being involved in the middle of everything and watched and listened to conversations around him. Warren loved the activities at The Exchange, particularly enjoying ice skating (put on a box in his wheelchair and being whipped around the rink), going out for lunch, his sensory college course and hydrotherapy sessions. Everyone here at The Exchange has a special memory of working with him. Even our service users, some of which have known Warren since his school days, were so devastated to hear about his passing and miss him greatly. Warren passed away on 20th June 2016 after a very short illness. The shock of his passing has hit his family most of all, but to us who worked with him, we miss his smile, his presence, we miss the opportunity of achieving new goals with him and the joy of caring and supporting him. For all of us at The Exchange our lives have been brighter for having known him and that little bit sadder without him.

45 Sturge Weber newsletter Friends in England Your chairman to England -Guest of the Sturge Weber UK 22 and 23 October History: I knew that in the past, my predecessors on our board had close contacts with our sister associations in England and Germany. In the few years I work as an interim chairman, the organization and activities of our own association were already exciting: no time to go abroad, except through our Brussels-based Jon Sneyers and Tina de Greef. Invitation: In early October, was invited by Jenny Denham, Chairman of Sturge Weber UK, to join the Coventry family gathering. Luckily there was space in my agenda on October 22 and 23 and a cheap seat on the plane that would bring me back from Rotterdam to Birmingham. Saturday: Saturday morning early - flying an hour - and already at 10.30 am I walked into the Hilton Hotel in Coventry. There was a room reserved for me and I soon got to the hall where all SW activities were taking place. Many had arrived the evening before. About 150 SW members with parents, brothers or sisters participated in the program. SW UK is a charity club, which means that all kinds of (sponsor) actions do support the club. Jenny Denham greeted me warmly, while proudly showing me the latest addition: an illustrated picture book about a child with a wine spot and his teacher and fellow pupils. (The Dutch edition is now also available!) The SW club had a whole hallway with a conference room, a teen room (where Gemma Wilson and Dalia Levi, Clinical Psychologists of the London Children’s Hospital, Great Ormond Street, held workshops), a crèche, room for discussion groups on behavioural problems and drop-in workshops. There was also a space where the remaining children were kept by ‘Entertainers’. In the common space, there was a lot of time to interact and exchange experiences. Mr. Whoops: Prior to and during the evening meal, both children and parents were actively held by Mr. Whoops a DJ especially for children. Children to the theme park and parents medical information: On Sunday all children went with buses to an amusement park (Conkers: At the heart of the National Forest. A unique mix of indoor and outdoor experiences), the youngest stayed in the nursery. After the Chair Jenny opened the adults meeting, I could introduce myself as a new representative of the Nv WSWs as successor of our former board members Ingrid Feron and Diana Willemsen. I had to convey the warm greetings ... Yes I did! Then in one quarter of an hour, treatment and approval of household matters such as finance, minutes of previous meeting, etc. (I could learn from this!) The medical presentations: Complications of Sturge Weber syndrome. Especially glaucoma - Dr. John Brooks specialist London Eye Hospital London Eye Hospital. Classification of Vascular Anomalies and Laser Treatment -Dr. Samira Syed (Great Ormond Street Children’s Hospital, London). Research results on the genetic cause of the Sturge Weber syndrome - Dr. Maanasa Polubothu. Aftercare Laser Treatment - Ms. Hilary Kennedy (Great Ormond Street Children’s Hospital, London) and after the joint lunch Epilepsy - Dr. Sophia Eriksson (The National Hospital for Neurology and Neurosurgery, London). Reduction of risks in the treatment of sws, guidance in headache problems and MRI perfusion - Dr Sara Aylett and Emma Ninnis (Great Ormond Street Children’s Hospital, London). At five o’clock, the children returned from their trip to the theme park, and Non Stop Kids was ready for them to work with all kinds of games until the joint meal. Participants from all over Great Britain and Ireland:Of course I took the opportunity to talk to a large number of attendees. They came from the entire kingdom, from Wales, Cornwall, Isle of Wight Kent, Scotland and yes, even a family from Dublin, Ireland. Everyone I spoke was pleased with the support they received from the SW UK and the various specialists and hospitals. It turned out that London’s Great Ormond Street Children’s Hospital plays a central role for many. On Saturday afternoon I attended the teen workshop as an observer. In addition, I have certainly gained ideas for our projects, “More than your wine spot”. All in all, it was a meaningful trip. Sunday evening I went to bed early because Monday morning my flight left from Birmingham to Rotterdam at 7.00. From there with the Interliner-bus to Zeeland. At 12.30 I was home again. Thank you so much Jenny Denham and your charity for your invitation! Reint Laan

46 Sturge Weber newsletter Sturge Weber UK Facebook and Twitter pages There are four Facebook pages that are administered by Sturge Weber UK. Sturge Weber UK closed Facebook page is a private group for anyone affected by Sturge Weber Syndrome to share views, experiences, seek advice and discuss their concerns. Families share any useful information and links on the page which may be useful to others. There is a useful information file on the page. As it is a closed group anyone wishing to join has to make a request before they are approved by the Admin of the group. If we are not 100% sure that the request is genuine we do not admit them, as families need a safe place to discuss any issues they may have. Sturge Weber UK – Public Face-book page is our Official Public Face-book Page which any member of the public can follow, it promotes the Charity, helps raise awareness and features many fundraising events and challenges that have been done to aid the Charity. It is used to share useful and interesting information on all aspects of Sturge Weber syndrome as well as any milestones, achievements and birthday wishes to any children or adults who are affected by the condition. I am sure you will all agree social networking is one of the most effective ways to share information. If you have anything you want to share on the page then please do get in touch either by sending us a message or email [email protected] Our Official Public Face-book page can been seen by everyone so please Like/Share and ask your friends and family to do the same! Sturge Weber UK Twitter page is linked to the open page above. Sturge Weber Awareness Day Facebook page was set up by Sturge Weber UK to raise awareness of Sturge Weber syndrome as well other SW charities and support groups on November 1st, the date of the birth of Dr William Allen Sturge. Sturge Weber Awareness Day Twitter page is linked to the Facebook page above. Beartie and Beartrice Travel the Word for Sturge Weber UK Facebook page was set up by Jayne Hall. Both Beartie and Beartice attend fundraising events, accompany SW children when they stay in hospital, attend the SW UK Conference and travel on holiday with SW children and of course, the grownups in the UK and to many other countries. Beartie and Beartrice Twitter page is linked to the Facebook page above. Below are some photos so you can see what they have been up to in recent months.

Beartrice at the SW Conference Beartrice and Sarah - Beartrice and Sarah - Colosseum, Rome Orange Square, Marbella Bertie and Tegan, England WTKA National Martial Beartrice - Malta Beartrice and Sarah - Arts Team in Italy Monaco, Monte Carlo Bertie - England WTKA National Martial Arts Beartrice and Sarah - Team Rock of Gibraltar

Beartrice - Malta Beartie - Rhys and the SW Balloon Race SW bears Bertie - England Beartrice enjoying the WTKA National Martial Arts Team sea view - Malta Maev and the SW bears

Beartrice - Spinola Bay, Malta

47 Sturge Weber newsletter Thank Yous As well as individual articles of fund raising events we would like to thank everyone listed below for their kind donations. We apologise if we have missed anyone. We would be grateful if you are organising an event for any few words you could send us and even better if you have any photos. Richard Milne Ironman event Peter Steele Selling photo calendars David Sharp Collecting box Gail and Stephen Courtenay Fundraising event at work Health Management Ltd Donations John Williams Cycling from John O’Groats to Land’s End Tenants at Mill Spring Court Donations Beryl Longworth Collecting at Mill Spring Court Grant McAllister Southside Invitational 2016 Catherine Agca Fundraising with colleagues at CBSbutler Frances Phillips Organising fundraising events in 2016 & 2017 Jayne Hall “My First Fiver” Kid Ease Nursery Fundraising event Vicky Morby “Vicky's Muscle Acre page” Folkestone Railway Club Clairvoyant Evening Ruth and Grant McAllister Sponsorship at their annual football match Ivan and Beverly Massingham Fundraising at several craft stalls Ryan Phayer and Team “3 Peaks Challenge” Rodney Pierce ACE Energy, collecting box collections Asley Ide Western District Lodge Ladies Night Louise Wilkinson Great North Run Pauline and Sid Van-Oestren In memory of their son Warren Isabel Smith Donations Daz Moore Donation via PayPal Christine Priestley Organizing a fundraising event Emma Shenston Donations via PayPal Caity Downs Donation from a stall she held outside her house Janice Doherty Donations via PayPal Carolyn and Rick Burns Donation Stewardship Donation via Stewardship Giving Linda Andrews Donation at the Family Weekend Debra Faran Charity Night in her salon, Beautyzone The Lawton family Donation Susan Harkin Collecting tin Siobhan Phillips Coloured hair dye event Margaret Stirratt Donation in lieu of Christmas cards Michael Murray Donation Roz and Bob Mason Donation Mrs Connie Moore Donations collected at 90th birthday John Docherty Donations via PayPal Steve Brennan-White Steve's trek to Everest Basecamp Urlic Salthouse Donations via PayPal Mrs Elizabeth Howe Donation Rachel Blackwell Donations via PayPal A M Taylor Donation Natasha Chainey Donations via PayPal Natalie Dalton Selling charity items Melanie Jones Stall at Darlington Community Carnival Louise and Brendan Stimpson Christmas donation Nigel Faulkner Donations via PayPal Maria Dillon Donation in lieu of Christmas cards Elizabeth Turner In memory of her Mum, Joan Pratt Folkestone Primary and Upper Academy School Fundraising event Kim Freeman and Saddleworth Stars Nursery Fundraising event Broxbourne District Rangers and Jane Howard Fundraising event Rob Parsons and Gemma Phelps Charity event Reg, Jenny and Dave the Poodle Donation Ruth Osborne at Race 4 A Laugh Donation Christine Priestley & Ribble Valley Walking Group Collection Diane Neville and Louise Smith Great Women's 10K 2017 Rebecca Langstead and Litz Butcher Fundraising Night Hans Ineichen Friend of Jeanette Tinsley - Donation via PayPal Kelly Youds, Staff and Residents at Meols Drive Care Home Fun Day held in memory of a resident The Buck Inn and Ribble Valley Golf Society Fundraising auction and raffle Isla Selley Dance project Donation in memory of Sian Probert Mandy Parnell Collecting tin at The Dragon Pub in May and August Ken Haile New Camberwell Lodge 7817 and Tudor Lodge of Instruction Gary Dalton Collecting tin in the canteen of the British Transport Police Philomena Dalton Collecting tin by the staff at John Lewis Solihull Yvonne and Neil Thompson Donations from renewing their Wedding Vows Kerrie Hiscock & Hannah Warner “It's not just a birthmark 'Half Trekathon'” Trefoil Guild Chose Sturge Weber UK as their Charity of the Year Cream Tea/ Quiz afternoon Mrs B Wells Donation for sale of her medallion by Caity Down’s grandfather Joy Corlett Holding a draw, collecting box at the salon and birthday donations Kim Wheeler Nore Light Lodge No 35 and the Honourable Fraternity of Ancient Freemasons Sharon Appleton WH Smith Charitable Trust for Sharon volunteering in their Charity Shop Natalie Dalton Continuing donations via “Natalie's Raise awareness for Sturge Weber syndrome” Janet Ferris From Co-operative Funeral Care, Liverpool in memory of her Mum Marcella Sullivan Charity Trustees Chairperson Treasurer Fundraising Co-ordinator Jenny Denham Antonia East Lisa Massingham Burleigh Fourwinds 2 Castle Close 348 Pinhoe Road Lyme Kiln Lane Gresham Exeter, Devon Uplyme, Lyme Regis Norfolk EX4 8AF Dorset DT7 3XG NR11 8RH 01392 464675 07706 951188 01263 577570 [email protected] [email protected] [email protected] Visit our web Site ... www.sturgeweber.org.uk Keeping our records up to date - If any names or addresses are incorrect for those who receive our newsletter please let us know by sending us your new details. Please note that the views expressed in this newsletter are not necessarily the views of Sturge Weber UK. designed and printed by express printing ltd • 01243 830367 • www.expressprintingltd.co.uk