Newsletter Summer 2013

The Neuro FoundationQuayside House, 38 High Street,Kingston upon Thames, Surrey KT1 1HL

Tel: 020 8439 1234 Fax: 020 8439 1200info@nfauk.org

The Neuro Foundation was lucky enough to receive four invitations to one of the Summer Buckingham Palace Garden Parties. Our Charity Manager Mike Mills together with three of our amazing Specialist Advisors, Carolyn Smyth, Helen Tomkins and Carolyn Redman, were all delighted and honoured to attend on behalf of the charity. They had a lovely day by all accounts despite the not so sunny English Summer weather. They told us the sandwiches and cakes were delicious!

We think they scrub up very well.

We were all very disappointed when we heard Dr Sue Huson and many more of our NF medical experts were unavailable to join us at our recent AGM, but were delighted to hear the reason why – they were attending the four day Children’s Tumor Foundation Annual Conference. Hundreds of the top geneticists and oncologists gathered in Monterey Bay, California to share the latest information on Neurofibromatosis.

While out in California, Chad Leathers, Director of Cupid’s Undie Run at The Children’s Tumor Foundation, presented Dr. Sue Huson of St. Mary’s Hospital in Manchester, England the “Passion is Contagious” award for her enthusiasm and dedication to ending NF. Dr. Huson was a featured speaker at the conference and commented that she feels there will be some effective treatments for neurofibromatosis in the next five to ten years!

Sue even brought the ‘undies’ along to the recent NF2 Conference in Guy’s Hospital London so we couldn’t resist a photo at The Neuro Foundation stand.

Doc Sue’s Award

The Neuro Foundation attend the Buckingham Palace Garden Party

www.facebook.com/Neuro Foundationwww.nfauk.org Registered charity No: 10787901

A Message from our Charity ManagerIt’s amazing how quickly time passes. We have only just had our AGM and by the time you receive this newsletter we will be in the final stages of planning the exciting NF2 Weekend in mid-September, as well as the Rasopathy Day in Cardiff with Professor Meena Upadhyaya at the end of the same month. The first Prudential RideLondon-Surrey 100 event, for which Alison has worked tirelessly, is also imminent.

It’s always very hectic here in the office in Kingston and there never seems time between major events for the team to draw breath; we owe them all a deep vote of thanks.

The AGM has now passed and we said farewell to Trustees, Richard Taylor and Markus Gilges who we thank for their efforts, time and support. We welcomed Dr Tim Corn as our new Chair and I’m looking forward to working with him to continue the rejuvenation of the Charity. I would also like to personally thank all the speakers for their informative presentations and to Hazel for organising another successful event. I hope I wasn’t too boring as the MC!

The funds of the Charity are in a much healthier position than this time last year and we are in a

position to gradually increase the number of Specialist Advisors to further enhance the support and guidance we can provide to you. The fortunes of The Neuro Foundation are reliant upon you all and I thank you for your continued support and fabulous fundraising achievements. We continue to ease our way forward to a more sustainable future.

I would like to thank all the children who submitted their imaginative designs for our Christmas card competition. It was difficult to choose a winner but I’m sure that with me you would like to congratulate Rachel Weller on winning the competition. Her design has now been sent to the printers and will be sold alongside the six other cards in this year’s Christmas card selection. We have printed some of the wonderful entries we received in this newsletter. I hope that you will support the Charity, as you did last year, by buying lots of cards. Our Christmas card flyer is included in the newsletter. If you would like any more flyers for family and friends, give us a call on 020 8439 1234 or download the flyer from our website.

Mike Mills, Charity Manager.

Introducing our new Chair of Trustees

Dr Tim Corn

Tim qualified in medicine at King’s College Hospital, London after gaining a Master’s degree in biochemistry from Imperial College. He went on to become honorary consultant and senior lecturer at the Institute of Psychiatry, London. For the past thirty years, Tim has worked in medical research in the pharmaceutical industry and has been involved in introducing twenty new medicines for rare diseases, the most recent being for childhood leukaemia. He holds a number of senior executive positions, currently sitting on the Boards of two research-based organisations. This work has given him a broad understanding of working with teams from many disciplines, to serve the needs of people affected by rare conditions.

(Chair, appointed July 2013).

Dr Tim Corn and Mike Mills at AGM 2013

2

Does your child have NF1 and Behavioural Difficulties?

Danny’s Story - Living with Neurofibromatosis“I was two years old when I was given a diagnosis of Neurofibromatosis. Although I don’t remember, I was very ill at two and a half years old and had to have major head surgery to remove the bottom half of my brain from my spinal column, as it had fell down it. Anyway I finally recovered after being in hospital for 3 months on and off, and am still here to tell my story.

I go to a mainstream school, Kings Norton Boys, and am in year 7. I love school so much, but sometimes my illness takes over me and I can’t go. I get very tired easily; I want to do things but my body stops me. I do think sometimes why me? But my Mum and Dad always say “because you’re special and like no other”. Sometimes I feel lucky, because you could say I have two homes, my Mum and Dad’s, and then the Children’s hospital. I have to go regular for check-ups with different consultants, but they are all fab with me. I’ve been going to the Children’s Hospital since I was 10 months old, so they all know me well and always make a joke with me about my notes as there is that many they have to bring them out on a trolley!

I’m a very happy child, although I don’t have much confidence and can be very sensitive. Some mornings I get up feeling great, but by the time I get washed and dressed, I can become very ill all of a sudden, and this is just how my life will always be. So i just got to try and plod on - onwards and upwards is what I think. I may

have a life long illness, but I’m not going let it beat me. People stare and make nasty comments but I just ignore them. I do have a wheelchair, but because people stare at my disfigured face when I use my wheelchair, I try to use it on holidays and walks only. I do have learning difficulties and I think I have a younger mind than my peers, but I also think this has something to do with my brain tumour. But at the end of the day I am just the same as everybody else but only with an illness.”

Sent in by Danny Blake-Burke age 12

Recent studies have shown that up to 25% children with NF1 have problems with their behaviour, communicating and interacting with others and making friends which may be features of autistic spectrum disorder.

Dr Huson, Professor Green and the research team in Manchester are looking for children across the UK with NF1 who have features of autistic spectrum disorder for the study they are hoping to start in the next month. If your child is aged 5-8 years and has NF1 and behavioural problems they may be eligible to take part in this research.

This is a new treatment trial involving medication (statins) and if this study is successful then it could possibly open

up an important new avenue of therapy for children who have NF1 as well as autism.

If you are interested please do contact us for more information. Please note that expressing an interest does not in any way commit you to taking part in this trial.

Email: hannah.tobin@manchester.ac.uk for more information and our research team will get in touch with you. If you do not have email access please contact The Neuro Foundation on 020 8439 1234 and speak to Hazel who will pass your details to the Manchester team.

Danny with Carolyn Smyth, one of our Specialist Advisors receiving a cheque from Barlcays.

3

Some of our amazing Neuro Foundation VLM Team 2013Huge congratulations to the twenty-nine fantastic people who made up the NF VLM team this year - each one of them undertaking great personal challenges to raise an amazing amount for the charity, we are so very grateful.

They were cheered off on their way at the start at Greenwich, with a fantastic crowd of people gathering at ‘our pub’ The Farriers Arms in Deptford where Meena, the landlady, had once again put on an amazing spread for all the supporters. The whole office team was on hand to welcome them back at the meeting point in Horseguards Road and then on to The Feathers, our other pub for a well-earned refreshing glass or two.

The London Marathon is our biggest annual fundraiser so an enormous thanks to all who took part and to all those who supported and sponsored them, it is so much appreciated.

We have places available to 2014 so if you would like to join the elite force, contact the office for an application form!

3

5

910

1

4

6

8

2

7

4

Some of our amazing Neuro Foundation VLM Team 2013

1. Adrian Wells

2. Beverley Packwood

3. Clare Schauerman

4. Dominic Hall

5. Dylan Burgess and his wife with Michael Reed

6. Litsa Hadjipantelis & Louise Chase

7. Mick Overton

8. Peter Yates (Pedro)

9. Stephen Waller

10. The Farriers Arms - Hazel, Dave, Marion & Mike

11. The Farriers Arms

12. Toby Vere

13. Viki & Paul Hindle & their boys

14. Adrian Paul passing The Farriers

15. Mick Overton, Clare Schauerman, Kelly Thomas, Ali Borthwick and Jess Pearce at the start.

16. Jess Pearce, Adrian Wells, Phil Harrington, Jo Lemmer

17. Jo Lemmer, Phil Harrington, Adrian Wells, Louise Chase, Litsa Hadjipantelis, Mick Overton, Clare Schauerman, Martin Page, Jess Pearce, Kelly Thomas, Martin Bunyan

18. Nicola Goode

19. Hannah Gillott

11

14

12

1315

16

17

18

19

5

Midsummers Madness Weekend 2013 – News from Pet ChapmanWell, what a mad, mad, mad wonderful weekend! Over 40 of us including the dogs, and with our ages ranging from 7 months to well over 70 years.

And as for what we do, no age boundaries, such fun … BBQ (I cooked in the rain), Fun Sports, Pasties in the ‘breeze’, Deal or No Deal Quiz, Bingo, Skittles, Battling the wind on the Beach, chatting with Dr. Sue Huson about NF, endless cups of tea … did you know you really can get 23 people in a 2 berth caravan and still have room for games and endless drinks and nibbles … with spare capacity as well! Think it’s the most the site has recorded – we may improve on that next year!

We will be back to Meadow Lakes again in 2014 and will let you all know the dates when we have confirmed them. Do log onto our Neurofibromatosis Cornwall Facebook page for all the updates or to contact us.

2014 celebrates our 20th weekend so we hope to make it even more special. So if anyone has any contacts in the china industry let me know … who knows what we mad people down in Cornwall may come up with.

Hope to see you next year

Pet and Ian Chapman

Tribute to Barry BirchBarry Birch was tall in stature and stood even taller in his trademark Stetson hat. He was an absolute Gentleman, dearly loved and respected and highly regarded not just by his family, but, many friends and neighbours. Barry’s Funeral took place in the Beautiful village of Berkswell in Warwickshire. The church was packed full of people and was a real testament to how many lives Barry and touched in his own quiet and unassuming way.

Despite his poor health Barry was stoic, never complained or moaned about things. In later years Barry discovered that he was a talented artist and spent lots of time creating very detailed pencil drawings.

Barry’s father sister and family would like to express their thanks to Gill Adams for the friendship and support she gave Barry and to Carolyn Smyth (Specialist Advisor) for her help, support and understanding for which they are so grateful.

Easter Coffee Evening in Manchester The Neuro Foundation was invited along to a coffee evening for people who attend the complex NF1 clinics at St Mary’s hospital in Manchester. It was a chance for everyone to get together, socialise, chat and exchange experiences in an informal setting. All the nurses in the team were there, together with Professor Evans. Several people commented on the difference access to this service has made to their health care. It was clear from conversations that this group of people need multiple hospital appointments to manage their health needs and they have now established a supportive link to the clinic and the service the doctors and nurses offer.

One lady who recently retired commented that she now has a full time job attending hospital appointments but is very reassured that her healthcare is managed so comprehensively. Rosemary Ashton (Abbott) represented the charity on this occasion and it was a lovely opportunity for her to catch up with old friends and meet new members and eat cake!”

6

Understanding NeuroFibromatosis 1Edited by Dr Carly Jim and Dr Susan Huson (to be published by Nova Science publishers)

Dr Huson and myself are in the process of writing a book on Neurofibromatosis 1 (NF1) in a way that

is understandable to all. The book will provide both accurate medical information and stories of people with NF1. It will have other useful features such as a glossary of medical terms, sources of support available internationally and include some pictures.

It is hoped that this will become the key resource for people wishing to learn about NF1, whether they be doctors, teachers, newly diagnosed people and their families or just for general knowledge.

In order to give a sense of the range of ways that NF1 can affect people and their families, all those with NF1

or parents with NF1 are initially invited to express an interest in their story being included in the book. I am afraid it is not possible to say at this stage which stories will get included and we are still considering the best format for this information, but if you are interested in sharing your story please e-mail c.jim@mmu.ac.uk or write to me at the address below. It is not necessary to provide detail at this point (although you are welcome to share your story with me if you would like to) but if you could provide your name, age and sex this information would be really helpful. The details will be stored on a secure database and I will contact you for further information in due course.

I look forward to hearing from you

Best wishes,

Carly

Dr Carly Jim; Lecturer in Psychology

RIHSC (Research Institute for Health and Social Change)

Manchester Metropolitan University (MMU)

Hathersage Road, Manchester, M13 OJA

Virtual Q and A with Dr Sue. We wanted to let you know some exciting news from Carly Jim.

Dr Sue Huson, Consultant Clinical Geneticist and NF1 specialist, will be holding a virtual question and answer session on Facebook on Monday 14th of October at 8pm (UK time). This will be on the Facebook page of the

MMU Well-being Research Group. In order to take part in this Q and A you need to be a member of this group. In order to join please visit the page and ask to become a member.

The following link will take you directly to the page.

https://www.facebook.com/groups/250894598354478/

Alternatively you can send a friend request to Carly Jim and then she can add you.

https://www.facebook.com/groups/250894598354478/

So put the date in the diary and come fully armed with any medical questions that you want to put to Sue. If you want to post pictures up to ask her about that is ok too. As with all of the posts on this page everyone

who is a member of this group will be able to see the questions and answers, so if it is something that you want to know the answer to, but don’t want people to know you posted it, then you can private message Carly

with the question and she will post on your behalf. If you are not able to make the Q and A and want to ask questions then you can PM Carly those as well. We are all very excited about this and hope you are too. If you

know of anyone else who would be interested in joining us then please tell them to join the group.

7

Recent Developments in Neurofibromatoses and Rasopathies: their management, diagnosis,

current and future therapeutic avenues  

30th September - 1st October 2013 Radisson Blu Hotel, Cardiff

This international meeting will provide a most comprehensive and up to date account of recent developments in neurofibromatosis and rasopathies. Internationally recognised outstanding speakers in this field will contribute to the meeting. The meeting will be suitable for medical geneticists, oncologists, dermatologists, neurologists, endocrinologists, psychiatrists, molecular and cellular biologists, genetic counsellors and general practitioners and members of lay groups.

Internationally recognised experts from the UK, Europe and USA who will be speaking at the event include: Professor Luis Parada, Texas, USA (Winner of von Recklinghausen award. USA) Professor David Gutmann, St Luis, USA (Winner of von Recklinghausen awardUSA) Professor Vic Riccardi, California, USA (Winner of von Recklinghausen award, USA) Professor Nancy Ratner, Cincinnati, USA (Winner of von Recklinghausen award, USA) Professor Eric Legius, Leuven, Belgium (Winner of European NF award) Dr Sue Huson , Manchester, UK (Winner of European NF award) Professor Kate Rauen, San Francisco, USA Professor Juha Peltonen, Turku, Finland Dr Bronwyn Kerr, Manchester, UK Dr Diana Baralle, Southampton, UK Professor Ros Ferner, London, UK Professor Gareth Evans, Manchester, UK Professor Mike Patton, London, UK Professor Oliver Hanneman, Plymouth, UK Professor Meena Upadhyaya, Cardiff, UK Professor Mark Zenker, Magdeburg, Germany Professor Miikka Vikkula, Louvain, Belgium

Topics covered will include

• Neurofibromatosis type1 • Neurofibromatosis type 2 • Schwannomatosis • Noonan syndrome • Noonan like with multiple lentigines • Costello syndrome • Legius syndrome • Cardio-facio-cutaneous syndrome • CM - Arteriovenous malformation

syndrome • Familial gingival fibromatosis

For further information please contact -

Angela Burgess, Education Project Manager Wales Gene Park

burgessam@cf.ac.uk

Tel: 029 20 687 267

The Neuro Foundation are hoping to hold a family afternoon on Sunday 29th Sept just ahead of the two day International NF Conference advertised below. This will be an opportunity to meet other families and some of the staff of The Neuro Foundation. Details are still to be worked but it will probably start around 3/4 pm for a few hours and we are hoping to have one or two

speakers from the medical world. The venue will be the Radisson Blu Hotel.

Please let Hazel know if you are interested in attending as soon as possible. You can call on 020 8439 1234 or email hazel@nfauk.org. If there is sufficient interest we will finalise arrangements and let you know the details in due course.

Family Day Cardiff Sunday 29th Sept

Hello Everyone,I hope you are all enjoying the sunshine! When this edition of the newsletter lands on your doormat I shall hopefully be sunning myself on a beach in the South of France.

As we have decided to holiday abroad in search of the sun this year, I can almost guarantee fantastic weather in the UK for the first two weeks of August!

Once again I would like to thank everyone who has contributed to this newsletter, especially Susan Lee who kindly answered my desperate pleas for something to print.

I also wish Jessica Cook every success with her book “NF2 Our Journeys”. I shall certainly be purchasing a copy at the NF2 Weekend in Sheffield, which is just around the corner now.

Please e-mail any ideas, articles, comments, jokes, reviews, criticisms(!) that you would like to see included in the NF2 section of the next newsletter to juliedking@tiscali.co.uk by 20th October 2013.

Here’s hoping the sun is shining on you this summer,

Julie

Staff at The Neuro Foundation were delighted to be invited to a recent Professionals NF2 Meeting in London. There was a range of presentations from an eminent list of specialists including:

Patrick Axon (Consultant Skull Base and Hearing Implant Surgeon)

John Elston (Consultant Ophthalmic Surgeon)

Gareth Evans (Consultant in Clinical Genetics)

Ros Ferner (Consultant Neurologist)

Chris Hammond (Professor of Ophthalmology)

Oliver Hanemann (Chair of Clinical Neurobiology)

Simon Lloyd (Consultant ENT Surgeon)

Sally Maspero (NF2 Clinical Nurse Specialist)

Charles Nduka (Plastic and Reconstructive Surgeon)

Allyson Parry (Consultant Neurologist)

Carolyn Redman (Neuro Foundation Specialist Advisor)

Scott Rutherford (Consultant Neurosurgeon)

Adam Shaw (Consultant Geneticist)

Victoria Williams (Consultant Neurologist)

Contributions to the meeting were also made by:

Dorothy Halliday (Consultant in Clinical Genetics)

Sue Huson (Consultant Clinical Geneticist)

Martin McCabe (Lecturer Paediatric Oncology)

Rupert Obholzer (ENT and Skull Base Surgeon)

Shak Saeed (Consultant ENT Surgeon)

Nick Thomas (Consultant Neurosurgeon)

Laura Turton (Hearing Link)

You will see from the list of attendees that a very wide range of topics was covered and expertise shared over the two days. Stands from The Neuro Foundation, LINK and Facial Palsy UK were also available.

National NF2 Meeting at Guy’s and St Thomas’ Hospital 20th & 21st June 2013

9

NF2 Clinical Nurse Specialist receives NHS Hero Award We were delighted to hear that one of the NCG Nurses based in Oxford, had recently been given the ‘NHS Hero Award’This award sets out to celebrate the unsung heroes of the NHS. Every single day thousands of dedicated teams and individuals go to extraordinary lengths to provide exceptional care. The NHS Heroes Awards is our opportunity to give these special individuals the recognition they deserve.In Claire’s case the award was presented with the following citation: “She is an outstanding nurse who works tirelessly for her patients and improves the quality of life for the patients and their families.”Congratulations Claire – what a lovely recognition of the job you do.In the photograph, some members of the Oxford NF2 team -(left to right) Dr Allyson Parry (joint NF2 service lead), Wendy Howard, (NF2 Nurse), Claire Mansfield (NF2 Nurse) and Dr Dorothy Halliday (joint NF2 service lead).

Many Congratulations to Claire Mansfield

The Oxford and South WestNF2 Patient / Carer Day

will be held onSaturday 5th October 2013

at the

Four Pillars Hotel, Witney, OxfordshireFor any enquiries, please contact Linda (NF2 Secretary) on 01865 231889 or

Linda.Porter-Goff@ouh.nhs.uk

Useful NF2 LinksOur team of advisors each work with over 500 people affected by Neurofibromatosis every year, giving practical, emotional and medical advice.

These are a selection of websites which they have found helpful to their patients. We’ve detailed the support each organisation gives, but please note The Neuro Foundation cannot be held responsible for the content of external websites and the support is at the discretion of each organisation. The Neuro Foundation does not necessarily endorse any of these weblinks but have provided them as a stepping stone to further information.

• The Princess Royal Trust for Carers gives advice and help for carers - www.carers.org

• Cerebra provides information on Disability Living Allowances - www.cerebra.org.uk

• Changing Faces Changing the way you face disfigurement - www.changingfaces.org.uk

• Facial Palsy UK Supporting people living with facial paralysis - www.facialpalsy.org.uk

• Newlifecharity.co.uk offers grants for equipment

• Over the Wall runs residential activity camps for children aged 8-17 who are seriously affected by illness - www.otw.org.uk

• Childrens Tumor Foundation (CTF) is based in the US and aims to end neurofibromatosis through research – the site has a wide range of information on NF - www.ctf.org

• Hearing Link in Eastbourne. UK hearing loss organisation that makes it easy to find the right information, appropriate services & meaningful ways to connect with other people - www.hearinglink.org/nf2programmes

• National Deaf Children’s Society’s mission is to remove the barriers to the achievement of deaf children - www.ndcs.org.uk

• Government Benefits Website - www.gov.uk

• www.adviceguide.org.uk Free, independent and confidential advice on benefits, DLA, PIPS’s etc.

10

Race report from one of our VLM team, Tom Guglielmi

So yesterday was my fourth London Marathon and you’d think that it would get easier with practice. But this was by far the most difficult and emotional of them.

I flew over to London on Friday, and went across to the Marathon Expo at the ExCel centre with Anna, where we collected our race numbers and joined in with the ‘pasta party’ (we marathon runners clearly know how to live on the edge).

We also found the Adidas store, and decided to go for a matching top combo (I think the last time this happened was about 20 years ago, when mum dressed us up in delightful matching green jumpers). I defer to my sister on all matters of fashion – so blame her for the outcome.

The night before the race, my friend David and his wife Jemimah kindly put me up – they live round the corner from Blackheath, which was ideal for getting to the start line. After a final huge bowl of pasta (which my Italian granddad would be proud of) it was early to bed.

We meandered our way up to Greenwich park the next morning to the backdrop of a clear blue sky (David drily remarked that they were ‘excellent spectating conditions’).

We held a 30-second silence at 10am, in memory of the victims of the Boston Marathon bombings just one week ago. I couldn’t help but think of Joe at this point, and I hoped he’d got a good supply of Budweiser in up there for what was going to be a long, warm day...

It took us about half an hour to cross the start line, surrounded by lots of weird and wacky fancy dress costumes (more than a fair share of mankinis – to which the commentator remarked, “well he could have shaved this morning...”)

The first part of the race was pretty uncomfortable. I was recovering from a cold the week before the race, and was having trouble breathing steadily through my nose. I kept repeating to myself “breathe iiiiiiin through the nose, and ooooout through the mouth” (in a very poor virtual impression of Mr Myagi from Karate Kid).

Eventually, my breathing regulated, and I just got on with the business of running. The support was amazing all the way round – the crowds were especially huge (and vocal) around the Cutty Sark after 6 miles, and then Tower Bridge after 12 miles – and this really provided a lift.

David’s banter on excellent spectating conditions proved to be right – after the halfway mark, the sun was proving to be pretty tough, and I was somewhat regretting the decision to wear a red beanie hat all the way round... the nice folk standing around Docklands holding cold pints of beer and firing up their BBQs got a particularly stern stare on the way past (thanks for that). Although I could have hugged the kindly fireman that had decided to open his hose up onto the runners – the cold shower felt amazing!

By the time I came through Docklands (around mile 21), I was really starting to hurt – and the taste of all the lucozade energy gels and drinks was getting a bit sickly. I saw David and Jemimah at mile 22, which provided a huge lift, and then caught my Dad at mile 25, just the other side of the Blackfriars underpass. By then, I just gritted my teeth and willed my legs on to the finish line.

Crossing the finish line was pretty emotional – relief at finishing, but also sadness that Joe was not there to see it.

My time was later confirmed as 4 hours, 34 minutes and 37 seconds – a new personal best by some 12 minutes. Very happy with that!

After that I made my way to the meet and greet section on Horse Guards Parade, where mum and Anna were waiting. Anna had finished in 4 hours and 42 minutes – apparently we’d been neck and neck for most of the race! However, despite the marginal victory, I was the one then doing an excellent impression of an arthritic 90-year old, whereas she looked fresh as a daisy...

So far, we’ve raised over £11,000 for Joe’s memorial fund, which will go towards supporting young people suffering from NF2. We hugely appreciate the support we’ve received – both donations and messages – throughout this year’s London Marathon. Thank you very much for your generosity!

So now there’s just the small matter of the Dublin marathon in October...

London Marathon 2013

s Anna and Tom proudly displaying their medals

Anna and Tom with mum Lynda after the race

11

NF2: Our JourneysA collection of inspirational life stories

Forty-four extraordinary individuals from around the world have united to create the first non-clinical book about Neurofibromatosis Type 2 (NF2) in order to help others.

NF2: Our Journeys contains a collection of inspirational life stories written by people with NF2.

“When you live with NF2 it makes you realise how precious life is and not to waste a minute of it” (Adam Murdey, NF2: Our Journeys).

“Although I had no control over the progression of the disease, I did have control over the effect it would have on my life” (Julie Broome, NF2: Our Journeys).

NF2: Our Journeys is the first project to be developed by a new self-help, support, and social advocacy group for people with NF2 called ‘Can You Hear Us?’, which was founded in January 2013 by Jessica Cook (who herself has the condition).

Can You Hear Us? are on a mission to prove that it is possible to live a happy and fulfilled life whilst battling with a degenerative condition that currently has no cure through the uniting and presenting of people who refuse to be defined by the disease.

Jessica says: “I developed Can You Hear Us? as a way of giving a voice to people with NF2, and the book NF2: Our Journeys has achieved just that. NF2 can be an

extremely isolating condition due to its nature in being so rare, but it is vital for people to know that they are not alone in what they are going through and for us to encourage each other to take advantage of adversity.”

“Follow whatever path you want to… usually the only person stopping you, is you.” (Susanne Rees, NF2: Our Journeys)

“There’s no other option, but to take it the way it comes and try to make the most out of it.”

(Fred Suter, NF2: Our Journeys)

Can You Hear Us? hosted a book launch event for NF2: Our Journeys on Saturday 13th July 2013 which signified the existence and availability of the book. The event was generously supported by donations from Lynda McFaull of The Joe Guglielmi Memorial Fund and The Neuro Foundation, and was made fully accessible for hard of hearing attendees through communication support kindly sponsored by Bee Communications.

NF2: Our Journeys is now available to purchase from

www.canyouhearus.co.uk/shop and will also be available at the NF2 Residential Weekend in Sheffield in September. All funds raised from book sales and donations will go towards future projects for raising awareness of NF2 and supporting those with the condition.

A huge thank you to everyone who donated towards the production costs of the book and helped to make this much needed resource for people with NF2 to become a reality.

www.canyouhearus.co.uk/shop

NF2 - Our Journeys - Available for purchase

12

How I became a Lipreading Teacher

Why did I decide to become a Lipreading Teacher?

I became involved in teaching lipreading as there was a need for someone to teach this essential life enhancing skill in the area I live in. I have friends and family who are hard of hearing/deafened. My husband sadly passed away from NF2 14 years ago and he was taught lipreading by a lady who has just retired at the age of 70. No one else would take up the challenge, and as I have family members who are hard of hearing I thought I would give it a go. I have enjoyed training for the career which I never would have thought I would be starting at nearly 60.

Lipreading is a vital communication skill that can help people avoid social isolation and live life to the full. I aim to build confidence in learners through a range of self awareness and self progression techniques.

Where it all began

My training was done at City Lit College in London, with weekly trips to Sheffield, Harrogate, Leeds and York. It was a huge commitment to undertake not only time wise, but financially and knowing it was a ‘calling’ not a salaried job! It was such a juggling act to combine what I was already doing with a full 18 month intensive course.

The course work included: 22 assignments, 15 hours teaching practice, 30 hours observing tutors, 60 hours observing my mentor in Sheffield, 120 hours of written work, lesson plans evaluation, tutorials.

What do I teach in a lesson?

All learners are encouraged to participate at the level they are comfortable with - this enables good communication strategies and listening skills, enabling and promoting social inclusion, hence, Re-join the conversation!

There is so much to lipreading it would be impossible to list everything that is taught but here are the basics:

• Introduction to lipreading; how we lip read

• Identifying consonant group shapes such as Pbm, f/v, tnd, w/qu

• Double consonants cl, br, tr, st, any double consonant - brown, crown frown

• Number work, directions, colours, any topic in the news so people do not miss out about everyday news items. Last year the Queens Jubilee and the Olympics were covered.

• Vowels - even though there are five vowels in the English language there are 21 different vowels shapes to see on the mouth/face

• BSL fingerspelling

• Support strategies for communication – which is very important as every student needs support on how to cope with hearing loss. How to acclimatise to a hearing loss is covered. Support is there not only in the class but afterwards for anyone, email, text face to face, over the telephone.

• Any news item concerning hard of hearing/Deaf/ deafened people.

• Up to date information about any topic connected to hearing loss such as the Apple Hearing Aid Application

The Future

I am really excited about this new beginning, even at my age! I will thoroughly enjoy teaching, inspiring and motivating people to learn to lipread as part of the bigger picture of learning to live with a hearing loss. There will be so many opportunities for me to be proactive about lipreading.

I have links with all the major societies and charities who work with people with a hearing loss and I support campaigns such as ‘Read my Lips’ by Action on Hearing Loss. I tend to contact my local MP’s for help and support – even if I don’t get any help from them at least they know my name and what causes I am aiming to raise awareness for.

Sent in by Susan Lee

Susan is a lipreading teacher based in the North of England. She covers Leeds and the surrounding areas in West Yorkshire. If you would like further details of the services Susan can offer, please visit her website www.susanleelipreading.com or Facebook page www.facebook.com/susanleelipreading.

You can also follow her on Twitter @susanleelipread.

I’m sure you will all join me in wishing Susan every success in her new venture.

13

I was delighted to be able to attend the AGM at The Signing Tree Conference Centre, Birmingham on Saturday 8th June. The AGM is a good opportunity to meet new people, both with NF1 and NF2 and catch up with familiar faces, such as the Head Office Staff, Trustees and not forgetting the Specialist Advisors. For those of you who were unable to attend, here is my take on the day from an NF2 perspective …

The formal part of the proceedings started with the election of the Trustees. At this point I was a little over eager and was told to put my hand down, as it wasn’t quite time to nominate Emily Owen as a Trustee! I am pleased to announce that Emily was indeed appointed to the Board of Trustees and she joins Stewart Lee, who was re-elected, as our “NF2” presence on the Board. Sadly Richard Taylor has come to the end of his term as Chair of The Neuro Foundation. Richard gave a very upbeat speech, thanking everyone who has worked towards turning the charity around. The Neuro Foundation is now in a much stronger financial position and is hoping to recruit 3-4 new Specialist Advisors in the next 12 months.

The new Chair of the Board of Trustees is Dr Timothy Corn. Tim has a medical background and currently works as Chief Medical Officer for a pharmaceuticals company. I’m sure his medical training and knowledge of clinical trials will be invaluable to the Charity. The final message from the formal part of the AGM was that “The Charity is easing its way to a brighter future”.

After a break we were given the opportunity to put

questions to the Board. In particular there was a discussion as to whether it would be possible to move the AGM around the country, as used to be the case, so as to give everyone the opportunity to attend an AGM near to them at some point. The AGM has been held at the same venue in Birmingham for the last 3 years, as the facilities are excellent and Birmingham is deemed to be easy to get to from most parts of the country. However it was obvious that only a small portion of the membership attended the AGM for whatever reason, and the possibility of changing the venue would be looked into.

After lunch Emma Cook, from Birmingham Citizens Advice Bureau, gave a very informative talk on “Welfare Reform changes and the impact on Disability Living Allowances”. The changes will not impact on everyone straight away. By putting “PIP checker” into Google and filling out your information you can find out in which year your claim will be re-assessed. The Citizens Advice Bureau is expecting its workload to increase as a result of the reforms and they have published a pack to help claimants prepare for assessment, which is available from Citizens Advice Bureaus or Head Office.

After another break the NF2 contingent were scheduled to hear a talk by Carolyn Redman on the NCG NF2 Service, however this developed into a sharing of experiences on Avastin and a general chat. This was followed by a talk by Colin Darling, from Changing Faces, entitled “Changing Lives and Changing Minds”. Changing Faces aim is create a world in which everyone has the confidence to face disfigurement. They offer social support through both individual counselling and workshops. They also offer a Skin Camouflaging Service and they run a Face Equality Campaign, working with Parliament and the NHS.

Next came two presentations from members; firstly Jessica Cook talked about her book project “NF2 Our Journeys”, which we featured in the last edition of the Newsletter and which goes on sale on 13th July 2013, then Dr Carly Jim introduced her NF File Project.

Finally Carolyn Smyth explained the role of The Neuro Foundation Specialist Advisor, which is far wider than I realised, and includes writing letters of support for benefit claims and acting as a patient advocate at tribunals and appeals, which is useful to know in the current climate!

As always I found the AGM interesting, informative and a great way of catching up with friends.

My Day at the AGM – by Julie King

From the left:: Emily Owen, Julie King, Tim Corn and Jessica Cook at the AGM

14

NF2 Weekend Programme We have a really exciting programme for the NF2 weekend later this year.

Although our room allocation has now almost gone there would still be an option to come along as day guests and join the Saturday and/or Sunday morning presentations.

The cost for Saturday day rate plus lunch is £35 per person for a Neuro Foundation member and £40 for non-member. The rate for the Sunday attendance is the same.

If you are interested in joining for one or both days please email hazel@nfauk.org or call the office on 020 8439 1234

Saturday 14th SeptemberChair - Mr Patrick Axon (Consultant ENT Surgeon)

Dr Gareth Evans (Consultant Clinical Geneticist)

“Research Overview for NF2” including Q&A

Dr Allyson Parry (Clinical Lead, John Radcliffe Hospital)

“Avastin Update” including Q&A

Mr Neil Donnelly (Consultant in Otoneurological and Skull Base Surgery) “Balance” including Q&A

Sunday 15th SeptemberChair - Dr Sue Huson (Consultant Clinical Geneticist)

Stephen Dubbins - Macmillan Development Manager

“Overcoming Barriers to Financial Support” including Q&A

Sarah Smith - Hearing Link

“NF2 and Hearing Loss” including Q&A

Jess Walburn “Psychosocial Effects of Facial Palsy” including Q&A

Jessica Cook

“NF2 Our Journeys”

Emily Owen, one of The Neuro Foundation’s Trustees

“Living with NF2”

15

Welfare is going through the most radical overhaul since its inception – driven less by policy debate and more by money. As the largest area of public spend at £190 billion you can see why welfare is a target. With planned welfare cuts of £18 billion and a cap on inflation increases and possibly on overall spending, it’s easy to get lost in the figures. However, as you know yourselves, there are real people behind the figures and some – notably those with disabilities – may suffer a multitude of different cuts.

So what are these cuts? And who will they affect?

1) Let’s start with the one that will affect you and the people you are caring for Disability Living Allowance (DLA). DLA is changing for people aged between 16 and 64. Personal Independence Payments (PIP) will replace DLA. This has already started for new claimants from 10th June 2013. However, for existing claimants of DLA you will see not change until October 2013 and beyond. If you want more information then take a look at: www.adviceguide.org.uk and if you want to know roughly when you will be affected then see: www.gov.uk/pip-checker

2) Next we have changes to Council Tax Benefit. At the moment, the amount you get in Council Tax Benefit is worked out according to a national formula that’s the same wherever you live. From April, local authorities will be responsible for running new Council Tax Reduction Schemes. Older people will be protected from any cuts to the rebate. However, if you’re under the age for getting Pension Credit, you’re unlikely to get a full rebate and will have to pay some money towards your Council Tax bill. If you are already feeling the pinch ensure you have applied for all the council tax reductions and exemptions that your circumstances allow.

3) You would have heard so much on this in the press ‘Bedroom Tax’? This is who is affected: If you rent your home from a social housing landlord such as the council or a housing association and you are of working age, your Housing Benefit may be cut. This could happen if your home is considered too large for you - for example, if your children have grown up and left home and you now have a spare bedroom. It’s important to find out if you’ll be affected, so that you can work out how you’ll be able to pay your rent when the changes happen. You won’t be affected if

you or your partner are no longer of working age. This is the age at which you can get Pension Credit. This will be approximately 61 years and 6 months in April 2013. It doesn’t matter whether you actually get Pension Credit, or whether you’re still working or not, it’s about whether you’re counted as being over the working age. Find out more at www.adviceguide.org.uk and search ‘cuts’ to Housing Benefit

4) Living on benefits can be a real struggle and money will not go far enough. In the past we have relied on the social fund for some additional help. However the Social Fund is changing. In the past if you get certain benefits, you used to be able to get a payment or loan from the Social Fund. These are meant to help towards the costs of unexpected or one-off expenses. However, as part of the welfare benefit reforms, parts of the Social Fund will be abolished, including Community Care grants and Crisis Loans. Money will be given to local authorities who they may choose to spend on replacement schemes, but they won’t have to. They could choose to spend the money on other things instead, such as local foodbanks and schemes which provide subsidised furniture and white goods. You need to speak to your district or borough council if you continue to need help in a crisis.

5) Universal Credit is probably the biggest change yet to come. If you are receiving one or more of the following benefits then it will affect you: income-based Jobseeker’s Allowance (JSA) income-related Employment and Support Allowance (ESA); Income Support; Housing Benefit; Working Tax Credit; Child Tax Credit. This Credit roles all the above benefit into one lump sum and pays you monthly in arrears. However, the changes will not be taking place for most people before October 2013. For more information go to www.adviceguide.org.uk

Emma Cook

Acting CEO – Birmingham CAB

Welfare Reform

16

One of our charity’s original co-founders, Clare Webb, was inspired after hearing about Jessica Cook and Carly Jim’s book ideas, recently shared at our AGM and Information Day.

Clare had the brilliant idea to compile some ideas, hints and tips on useful ways of helping people with NF.

There may be many useful coping strategies that our members and supporters already use on a daily basis and it would be great if we could share these.

This is probably particularly relevant to young children or people with hearing impairment for example.

Simple things like pencils with silicon grips, velcro fixings in place of laces, the Boogie Board LCD Writing Tablet to mention just a few. The list is probably endless.

What worked for you? If you have any simple ideas you would like to share, we would love to hear about them.

Please email hazel@nfauk.org or call on 020 8439 1234. Thank you.

Useful NF1 LinksOur team of advisors each work with over 500 people affected by Neurofibromatosis every year, giving practical, emotional and medical advice.

The links below will hopefully be able to offer further information on NF1.

However, please note that no responsibility can be accepted by The Neuro Foundation for the content of the sites. The Neuro Foundation does not necessarily endorse any of the weblinks but have provided them as a stepping stone to further information. If you are in any way concerned about your health and NF, we recommend that you always consult your family GP.

• Children’s Tumor Foundation: www.ctf.org

• Contact a Family for families with disabled children: www.cafamily.org.uk

• Charity to help children with brain related conditions: www.cerebra.org.uk

• Changing the way you face disfigurement: www.changingfaces.org.uk

• Charitable organization caring for disabled children: www.newlifecharity.co.uk

• Gene test website: www.geneclinics.org

• Genetic Alliance UK: www.gig.org.uk

• UK Government website: www.gov.uk

• Free, independent and confidential advice on benefits, DLA, PIPS’s etc.: www.adviceguide.org.uk

• Strongbones awards grants for medical equipment: www.strongbones.org.uk

• Over the Wall runs residential activity camps for children: www.otw.org.uk

• The National Parent Partnership offers information and support to parents and carers: www.parentpartnership.org.uk

• Information for parents of children with autism spectrum and other neurological difficuties: www.cambiangroup.com/Ourservices/ EducationServices/ParentalResources. aspx

• Health information – Scotland: www.nhs24.com

• The Scottish Advice Service for Additional Support for Learning: www.enquire.org.uk

Call out for Practical Hints and Tips

17

We were delighted to receive so many entries to our competition with some lovely designs from our members and supporters of The Neuro Foundation. There are clearly a lot of budding artists out there. You can imagine how difficult it was to judge them and find just one winner. In the end Mike Mills, our Charity Manager, selected the winning entry.

We have notified Rachel Weller, age 9, that she won the prize and we will be printing this design for sale, together with our other card selection for 2013. How exciting is that?

Results of our Children’s Christmas Card Competition

The Winning Designby Rachel Weller, aged 9

However we wanted to share a selection of the other entries we received in the Kingston office as they were too good to keep to ourselves. Thanks to all those boys and girls who sent in their lovely drawings and paintings. Well done!

18

Results of our Children’s Christmas Card CompetitionWow, what a day 17th May turned out to be. Following the enormous success of last year’s amazing NF awareness day there was already lots of enthusiasm for this year’s event. Anyone who logged onto the many NF related Facebook sites including The Neuro Foundation’s own page will agree that a lot of fun was had by a lot of people, whilst all helping to raise awareness of NF.

A selection of the many fab photos we were sent are included on this page.

Check out some of the cute costumes and we included Carly Jim’s as she made such an effort.

All in all it is safe to say that World Neurofibromatosis Awareness Day was just amazing! The Neuro Foundation sends heartfelt thanks to members, supporters and friends who celebrated the day so spectacularly - your support is invaluable!

World Neurofibromatosis Awareness Day 17th May

Our very own Cinderella -

Carly Jim – was at the Bean and Brush Cafe

in Sale as part of the Fancy Dress 4NF

celebrations - looking fab Carly!

So cute! Emma Johnson’s daughter, Layla, as Woody

Patricia Knock had a brilliant idea! She wore her Neuro Foundation t-shirt at her Doctor’s surgery to talk to people about NF and hand out information leaflets

Susanna Mercer hosted a tea party as part of the World Neurofibromatosis Awareness Day celebrations - delicious looking cakes, beautifully displayed!

Clare Barklam’s daughter, Abby, looked very cute in her Princess costume - Tiddlywinks Nursery in Tipton celebrated

World NF Day

These are Dawn O’Keefe’s children ready for school

Here’s Kelly and Dawn in their Fancy Dress 4NF costumes, out and about in Hanley -

looking good ladies!

Dave Edgerton tells us that his

granddaughter, Lilly-Rose, loved her

Minnie Mouse costume

Viki Hindle’s boys went to school with blue hair for the day - we love those cheeky grins!

Helen Tomkins, The Neuro

Foundation Specialist Advisor

in Plymouth, and her colleague

Sarah Hunter raised awareness at

Derriford Hospital today - thank you so much!

19

MARCHBirchwood Tombola Sue Harrison, a long-time friend and supporter of The Neuro Foundation, ran a Tombola at the Birchwood Shopping Centre in Warrington on 16th March. Many thanks Sue.

New York City MarathonOn Sunday 17th March Vicki Hallsworth ran the New York City Half Marathon Day for The Neuro Foundation - how exciting is that? Congratulations and a huge thank-you. Check out her lovely photo taken in Central Park just before the start.

X-Runner SeriesMatt Schofield set himself quite a challenge when he decided to take part in the X-Runner series of events this summer, starting with “Wild Warrior” 17th March - the “ultimate mud run and obstacle race” over 10k. Matt completed the race in an impressive time of 1h 37m! We thought you might like to see the before and after shots.

Coffee and Cakes in UlverstonAnother of our amazing supporters, Elizabeth Samson, organised a fundraising event at The Coronation Hall, Ulverston on 30th March with coffee, cakes and a great variety of stalls. A big thank-you to Elizabeth. Charlotte’s Tea Party Charlotte Dart and her Mum, Julie, organised a Tea Party for family and friends in the Torquay area on 30th March.

The cakes looked amazing. Thanks to everyone who took part on behalf of The Neuro Foundation. Have a look at the lovely picture from Charlotte - those cakes look delicious!

APRILCrazy Guy on a Bike Geoff Barnett undertook a most amazing journey from East coast to West coast of the USA, by bike! Geoff began his challenge early April and completed in mid-June. To follow his adventures check out his blog: www.crazyguyonabike.com

Paris MarathonJohn Praill ran the Paris marathon on 7th April in aid of The Neuro Foundation. Well done John and thank-you.

Cycle SportifJustine and Charlie Ward organised the Cycle Sportif from Newton by Castleacre, Norfolk on 14th April. Entrants could opt to do a 50 or 100 Km ride on mountain bike, road bike, tricycle or tandem. The reward was a beer and a BBQ at the end and all in aid of raising funds for The Neuro Foundation. Thanks to all who took part and a big vote of thanks to the organisers. Brighton MarathonMany congratulations to Rob Walter, Lee Jones & Scott Frazier who all completed the Brighton Marathon on Sunday 14th April in personal best times - well done guys! Here they are proudly wearing their medals and enjoying the sunshine on the beach after the race.

Abseiling down the Avon GorgeSasha Squires amazed us all by abseiling down the side of the Avon Gorge – twice! We are so impressed - thanks Sasha!

Greater Manchester MarathonFaye Lipscombe ran for us in the Greater Manchester Marathon on 28th April to raise money for The Neuro Foundation as her sister in law’s daughter Olivia has NF. Congratulations Faye and thank you!

Some of our recent fundraising and awareness eventsOnce again we have been amazed by all of your fantastic fundraising efforts. We would like to say an enormous thank you to all those who have so kindly given up their time to help the work of the charity, supporting those affected by Neurofibromatosis. Thank you!Here are just a few of those events.

20

Plymouth Half MarathonRob Dyer ran in the Plymouth Half Marathon on 28th April as part of a series of fundraising events being organised by his family. He even achieved his personal best time. We now hear he is planning his next run! Many thanks Rob.

MAYLondon to Paris Bike RideAmy Caple took part in the London to Paris bike ride on 8th May. Brilliant photo Amy – a big thank-you. X-Runner SeriesIn the second of the X-Runner challenges on 5th May Matt Schofield completed the Mad Monk 10k obstacle race through cargo nets, pipes and up and down a few hills. His T-shirt didn’t look quite as muddy as last time, though the swim across the river at the end of the race might have helped!

Sheffield Half MarathonCongratulations and thank-you to Nick Wain and Matthew Mellon who both completed the Sheffield Half Marathon on Sunday 12th May in aid of The Neuro Foundation.

Snowdon ClimbJessica Fallon and a group of family and friends successfully hiked to the summit of Snowdon on 18th May via the Llanberis path. The view from the top of Snowdon

wasn’t as clear as it might have been on Saturday but Jessica and team told us they still had a great day. There were ten people in the group, including two nine year olds who all climbed the five miles to the top and the five miles back down again - what an achievement for the whole team. Congratulations and thanks to all for taking on this challenge! Wirral Coast WalkSue Harrison also organised a group of people to do the Wirral Coast Walk on Sunday 19th May - 15 miles through some lovely scenery, donating sponsorship money to The Neuro Foundation – well done and thank you all so much.

Barclays DonationDanny Blake-Burke accepted a giant cheque from Barclays Bank on behalf of The Neuro Foundation. Here he is with from left to right - Carolyn Smyth, Specialist Advisor for

The Neuro Foundation; Councillor Andy Cartwright; Donna, Danny’s Mum; Danny; and last but not least, Diane, Danny’s Nan. Many thanks to Barclays and the people who nominated The Neuro Foundation. It is very much appreciated.

Bedford LionsBedford Lions made a very generous donation to The Neuro Foundation recently - Carolyn Smyth, our Specialist Advisor in Birmingham, collected the cheque on behalf of the charity. Many thanks on

behalf of all at The Neuro Foundation.PoolathonKatie-Rose Siverns organised a 12 hour Poolathon on 24th May. What a great idea. Thanks to everyone who took part and thanks for organising Katie.

Gun Tavern Fun DayThe Gun Tavern in Worcester held a Fun Day on 25th May organised by landlady, Jenny with help and assistance from family members Derrie, Debbie

and Joanne. A great crowd turned out – check out the lovely photo. Thanks to everyone who participated. Bupa Great Manchester RunThe Neuro Foundation was proud of the team who took part in the Bupa Great Manchester Run on 26th May. Well done ladies and thanks to the Team - Catherine Mitchell, Emma Butler, Gillian Ash, Clare Hollyhead and Laura Jayne Cox.

Edinburgh MarathonAlso running for The Neuro Foundation on 26th May was Andy Corney. He ran the Edinburgh Marathon and tells us that he has already decided to sign up for next year - now that’s what we call dedication! Thanks Andy and well done.

21

Some of our recent fundraising and awareness events (contd.)

JUNE‘Three Things to do….’One of our members, Julie Fore set herself a target to complete three tasks before she hit A big birthday. Julie completed the Wilmslow Half Marathon in 2012 and climbed the Schmutzig route on Pandy Outcrop in North Wales the year before. This year the challenge was to complete a ski run on a mountain – and guess what she did it!!! A big thank-you Julie and well done on taking part in those amazing challenges.

5th Annual Charity Bike RideOur thanks as always go to Clive and Sheila Owen who organised the 5th Annual Charity Bike Ride, in memory of Ian Owen, starting from the Cwmavon Community Centre near Port Talbot on 1st June. They are long-time friends and supporters of The

Neuro Foundation and this event gets bigger and bigger each year. There was a choice of doing the ‘epic route’ for the more experienced riders or the ‘standard route’ suitable for junior entrants. The weather was fab and great company made for a great day. We particularly love the sea of Neuro Foundation t-shirts too! Middlesbrough 5kTracey Addison completed the Middlesbrough 5k in aid of The Neuro Foundation on 2nd June. Thanks Tracey. Ben NevisA big mountain and a big challenge! Dougie Johnston, Tony MacCarrey, Steve D’Sylva, and William Brown took on the challenge to climb Ben Nevis today in memory of Tony’s brother in law, Alex Newbery. We include a few of the pictures taken during their ascent of Ben Nevis and as you will see they made it to the top! Fish and Chippy NightFriday 7th June was Fish and Chippy night in Birmingham! Thanks go to Donna, Danny and family for organising the event for family and friends. It was a great success! We think this might be a fundraising first for The Neuro Foundation - your ideas for original and different new events never cease to impress us!

Karrimor Great Trail RaceIf running the Bupa Great Manchester run wasn’t enough, an intrepid team of ladies took part in the Karrimor Great Trail Race in Keswick on 9th June. We want to say thanks to Emma Butler and Laura Jayne Cox - we are doubly impressed by their determination and dedication.

Manx Telecom Parrish WalkGary Conwell took part in the Manx Telecom Parrish Walk on 23rd June – 85 miles – around Isle of Man in memory of his beautiful daughter Nicola.Tea PartyA big thank you to Debbie Turney who organised a very successful tea party and raffle for The Neuro Foundation in June.

3 Peaks ChallengeVery big congratulations to Nathan Diamond, his dad Stephen and friends who completed the Three Peaks Challenge on Saturday in 22 hours despite the weather which was against them on

Scafell and Snowdon. Brilliant, well done guys!Another 3 Peaks Challenge

Team Flaxman, also known as Ros Cooper, Darren Pope, Will Fisher, Alan Westaway, Szymon Fiuk, Richard Everson, Gwyneth Everson, and Geoff Everson also completed the Three Peaks Challenge on 28/29th June by

climbing Ben Nevis, Scafell Pike and Snowdon and all within 24 hours – fantastic and many thanks.X Runner SeriesMatt Schofield of X Runner Series fame took part in Water Wipeout at the National Watersports Centre in Nottingham on 29th June - the third in the X Runner series of events. This time it was a 10k obstacle course which includes over fifty obstacles - water slides, tunnels, hurdles, swamps, pontoons, cargo nets, balance beams and an assault course! Sounds easy enough! Well done Matt and a huge thank you.

22

JULY1st ......................................Tandem Skydive, Maidstone, Kent

6th Trinity School Summer Picnic & Prom, ................................................................................... Croydon, Surrey

7th ................................................. A Walk for George, Surrey

11th .....Standard Chartered Great City Race, London

12th ............................................Tandem Skydive, Shropshire

21st .....................................................Manchester Colour Run

21st ................................................Milton Keynes Big Fun Run

26th - 30th .............................................Hadrian’s Wall Walk

AUGUST4th ............................... Prudential RideLondon-Surrey 100

4th .......................................................................Bike Ride, Suffolk

4th .................................................................................................LeJog

10th ...........................................................SkyDive, Nottingham

SEPTEMBER1st ........................................................West Midlands Marathon

8th ......................X-runner series, Wild Thing, Derbyshire

14th ............................. Junior Great North Run, Newcastle

15th ...........................BUPA Great North Run, Newcastle

16th .................................... London to Brighton Cycle Ride

29th ............................................... 10 k Obstacle Race, Leeds

OCTOBER6th .......................................................................8 Peaks, Cumbria

20th ........................................BUPA Great Birmingham Run

27th .........................BUPA Great South Run, Portsmouth

A few of our forthcoming fundraising eventsOur list of upcoming events is getting bigger all the time. Check out some of the range of things happening in your area. A selection of events is listed below. Check our Facebook page or website for regular postings of other fundraisers taking place around the country.

Some of our recent fundraising and awareness events (contd.)

23

CONTACT DETAILSQuayside House, 38 High Street, Kingston Upon Thames, Surrey KT1 1HL

Tel: 020 8439 1234 Fax: 020 8439 1200Email: Info@nfauk.org (use for general enquiries) fundraising@nfauk.org (use for all Fundraising enquiries).

Website: www.nfauk.orgFacebook: www.facebook.com/Neuro Foundation

With heartfelt thanks to all of you who have donated to The Neuro Foundation

We held a small informal coffee morning in a Kingston coffee bar on 10th April – it was really great to meet up and exchange thoughts and ideas.

We look forward to our next get together so, if anyone who is not currently on our membership database would like to know more about the Kingston-Surrey Support Group please contact info@nfauk.org or call 020 8439 1234.

Look forward to seeing you next time!

Kingston/Surrey Support Group Meeting

I WOULD LIKE TO HELP THE NEURO FOUNDATION BY DONATING THE SUM OF £ ...................

I would like to become a member of The Neuro Foundation and enclose payment of: .......................................................

Family membership £ 22 Individual Membership £ 15

Other membership types are available on request including Life Membership

You can forward a cheque made payable to The Neurofibromatosis Association or alternatively we can accept

payment by credit/debit card:

Please debit my card number: _ _ _ _ /_ _ _ _/_ _ _ _ /_ _ _ _ Issue Number _ _ _ _ _

Start Date _ _ /_ _ Expiry Date _ _/_ _ Security Code _ _ _ Date _ _ /_ _ /_ _

#

First name ....................................................................................................................................

Surname ......................................................................................................................................

Address .......................................................................................................................................

.............................................................................................................................................................

........................................................ Post Code ..........................................................................

Tel no. ..........................................................................................................................................

Email ..............................................................................................................................................

If you are a UK taxpayer, under the Government’s Gift Aid scheme The Neuro Foundation can claim the tax you have already paid on your gift. This means that your donation can increase in value by at least 25% at no extra cost to you. You must pay UK income tax or capital gains tax equal to the tax we can claim on your donations.

Signed .................................................................

Date ....................................................................

Exciting updateThe Neuro Foundation is now a member of the Fundraising Standards Board (FRSB) – an independent self-regulatory organisation.

As a member we are committed to the highest standards in fundraising. We follow

the FRSB’s Fundraising Promise as well as the Institute of Fundraising’s Codes of Fundraising Practice.

We use the FRSB logo to show you that we are following these standards and you can trust us and give with confidence. Further information on this scheme is available on the Give with Confidence website - www.frsb.org.uk/give-with-confidence .

For further information visit the Fundraising Standards Board website www.frsb.org.uk