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ISSUE 122

SPRING 2013

withinReach

The Official Magazine of the Association for Children with Upper Limb Deficiency

It’s

Ability not disability that

matters


Please send photographs and stories for Within Reach to: Jane Garrett The Editor, Within Reach, 2 Farmside Cottages, Hound House Road, Guildford, GU5 9JG Tel: 01483 203237 Mobile: 07884 268594 Email: janeg@reach.org.uk

ISSUE 122 JO DIXON P04

SPORTS PAGES P14-P15 MAKING MUSIC P08-P10 REACH AMBASSADORS P05 & P18 BRANCH NEWS P16 & P22-P23

National Co-ordinator: Jo Dixon Reach, Pearl Assurance House, Brook Street, Tavistock, PL19 0BN Tel: 0845 130 6225 Mobile: 07879 678909 Email: reach@reach.org.uk Office hours: Monday-Friday 9am-5pm website: www.reach.org.uk Follow us on twitter: @reachcharity Facebook: www.facebook.com/reachcharity

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within Reach

WITHIN REACH MAGAZINE

Registered charity no. 1134544 Comments, articles, requests, ideas: We are pleased to receive comments, articles, requests or suggestions, for future editions of Within Reach. Letters: Any letters for publication should include the name and address of the sender, but these can be withheld from publication if requested. Advertising: Within Reach has a print run of 2,000 and is distributed to members, subscribers, health services and specialists. If you need to reach this key audience, call: Jane Garrett on 01483 203237 The views expressed in this journal are not necessarily those of Reach and are not intended to reflect or constitute Reach policy, or in any way portray an official view. July

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Closing Date: Material for inclusion in the next issue must be received by: 1st July 2013

Reach membership Membership of Reach is open to parents of children with upper limb deficiency and other individuals of 18 years and over who are interested in furthering the work of the association. Junior membership is given to children who have an upper limb deficiency. The UK subscription is £30. You will receive a quarterly magazine plus you will be afforded access to the ‘members only’ area on our website: www.reach.org.uk Reach Insurance Reach carries an insurance policy which covers the good arm of affected children who are UK citizens, against accidental loss. The good arm is covered against permanent total disablement in the sum of £50,000. This cover is a benefit to members and is effective from birth to 65 provided membership is continuous. Details are available from HQ. Other publications available from Reach * Reach - An Introductory Booklet * The Child with an Artificial Arm: Guidelines for Teachers * Pollicisation - clinical notes * Poland Syndrome: a short description * DVD - An introduction to Reach, free on request


VACANCIES VOLUNTEERS are needed to take on the role of Branch Co-ordinator in Cornwall, and South London and Yorkshire - South & West and Derbyshire and Lincolnshire and Nottinghamshire and to share the role in Kent. Please contact Jo Dixon at jod@reach.org.uk

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WELCOME TO OUR SPRING ISSUE - NO 122 Family Weekend and Reach Activity Week, and hope to squeeze a trip to the Scottish Branch Family Weekend, so I can meet as many families as possible and start to put faces to names!

MEET JO DIXON, OUR NEW NATIONAL CO-ORDINATOR

I have such large shoes to fill, so am taking it slowly but surely! I am totally new to Reach, but I have worked in the voluntary sector for most of my career in small and large organisations, and am loving it so far!

A little bit about me: I am mum to Angus aged 11 and Fenella 7, and we live in the most beautiful but wettest part of Devon. We make the most of where we live, and are mostly found in wellies and waterproofs somewhere on the moor or beach!

In the four months since I joined, we have moved the office closer to my home in Devon, rolled out a new website and are currently working on the new membership database - it’s a constantly changing place and I can’t take credit for these exciting initiatives as the trustees and branch co-ordinators work very hard to ensure the organisation is developing.

I have such large shoes to fill... ...and I am loving it so far!

The Facebook page is very active and a great way of sharing your experiences and achievements with other families, and I am really looking forward to the ○

Key Dates

Reach 2013

Family Weekend and AGM 25th - 27th October - Leeds Marriott Hotel

Book now for the weekend of the year with activities for the children, interesting speakers for the adults and plenty of time to meet up with old friends or make new ones. It’s a chance to mingle with other families and share experiences. A good time is guaranteed at the dinner dance in the evening too. Come along and have some fun! (Special hotel rates, so book early, and all bookings must come through Reach.) ○

Within Reach magazine printed and distributed by Branded Media Ltd, Unit A, Lutyens Industrial Centre, Bilton Road, Basingstoke, Hants RG24 8LJ www.brandedmedia.net

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54 Rue Escudier, 92100 BOULOGNE, FRANCE

FRANCE ASSEDEA, Association d’Etude et d’Aide aux Enfants Amputés,

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ITALY Claudio Pirola President Raggiungere, Via dei Missaglia 117 - 20142, MILANO, ITALY email: info@raggiungere.it www.raggiungere.it

REACH LINKS ABROAD NEW ZEALAND Nikki Adams 10 Pennant Grove, Onepoto, Titahi Bay, Porirua, New Zealand 5022 Tel: 006442367147 email: niknewzealand@yahoo.com


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I hope to be popping along to events throughout the year if work permits.

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There are exciting times ahead for Reach and I’m pleased to announce that Paralympic Medallist Claire Cashmore and BBC Missing Top Model Kelly Knox have both been appointed as Reach Ambassadors. Welcome on board, guys! So who better to introduce them to you all than the girls themselves. Over to you Claire and Kelly...

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KNOisXvery LamLbY KaE ssador is vin a ry e s or to espir

One of the key things about the Olympic Games was to inspire a generation and my ambition is to inspire some of the young girls and boys in Reach. Yes, I have a disability but anything is possible and you can go out there and achieve without an arm or whatever. During my teenage years I was self conscious about having only one arm but actually it has given me so many great opportunities. I swim and represent my country.

My role as ammeb, asI sawdant to I’m spire nt - in ars rtalent to mem e Imw Myporo b , e im m I’ t toeen bers I a-im to imepoyrtoaunng/t eenammeam nd th /t y, g im I itto n a iv u o it I eudyo wh anodf pos ity, thro m p e a g I a s iv s o it e h s m o w p d a f m! ois spproreuad a maensdsaogpetim e d c a ism! n re e m p ti d s fi p con nd o me a more e c n e en life not held m baeckevin s confid e a m , h e d d ld in n a e termtheed ’s m one ha d hinasfanco t t ith ore bledde m a is n Having one heavn d e r, v l! e e rd e thee wo word ow isI fe ty ade m Haacvkingin lifect itd’s b on’tm likedisasblendot - rethfleect hel! Soacnie d fa I , in d e fe on ve ee d doe ect h ter,rmin e thtie w o d o. se led I pers it’sang e waonrd b th v a is e k a fl li d g re e n ’t a t d h on is no as an to c I odrd sme n e o t o n rs w d a e l p w e d b n ns I ve waill la od disapbtile ge. ietity ne ca og S of aperce e d as to chan m t l in n e k a b w e la s I l o il th s w n o it’s percepti kind of

CLAIRE CASHM ORE

My only barriers in life are people’s attitudes, ignorance and judgments, and I hope through my work as a model, I can help to break those barriers!

Organising the wedding was tough because I spent most of 2012 abroad. Not only was I busy filming with Channel 4's ‘A Place in the Sun’, I also filmed my 3rd series of Fort Boyard (in France) for ITV. I presented ‘Text Santa’ with Jeff Brazier, which was fun, and also the Royal Television Society Awards where I really got to glam up! This year I have started filming a brand new show with Channel 4 due to go on air in May.

I hope that 2013 has got off to a great start for you all. A lot has happened since I last wrote, including my biggest news...I’m now a ‘Mrs’. Alex and I got married in September last year. We had a fantastic day and we are loving married life.

A BIG DAY FOR PATRON LAURA

AND TO SOME EXCITING NEW FACES

It makes me different, and gives me a story to tell. Hopefully I can be a role model, showing how, like Kelly, I have gone out there and got on with life.

It was a real honour to be asked to be an ambassador

Thanks girls! So now you have three of us which is fantastic. We will all be working together to get ‘Reach’ out there and are really looking forward to the exciting future ahead. See you soon, Laura xx @laurahamiltontv

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TRUSTEE NEWS

I am a prosthetist and I have been involved with people using artificial limbs since 1996. Through my work I was invited in 2006 to speak at the Family Weekend and I went along. Since then I have been to lots of Reach events and thoroughly enjoyed the ethos of Reach and what it stands for.

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I feel like it’s

New Trustee ‘JJ’ James Jones, is a familiar face at the Reach AGM James has been actively involved since birth in all the Reach activities and events.

Trustee Dominic Hannett brings his professional expertise as a prosthetist to the Reach team

It has no political focus or hidden agenda and is just about helping people. I like its family focus. It is a lovely organisation and I have continued attending Family Weekends to give advice. The company I work for, Opcare Ltd, sponsors the event as well. We work with the NHS which contracts out its putting prosthetics services.

“I was born without back into Reach as thumbs and at around much as I can, using Over the Family Weekend I am three years old I had around to give advice and some of a double pollicisation. I the skills and resources our staff have given talks. I can was heavily involved with I have. explain to people what prostheses both the branch activities are out there. My approach is that and the support offered you don’t have to use prosthetics. by Reach, much of it The majority of people with upper given over the phone by Sue Stokes. limb impairment actually choose not to use a When I was 11, I went on the very first Reach prosthesis as the Activity Week and loved meeting new people movements of a hand and getting to know every other Reach member. or arm are so much It’s been a highlight of my year ever since and more complicated than it was great transitioning straight into becoming a leg. a leader when I turned 18. ○

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James is always available to chat or share experiences. Contact him on jamesj@reach.org.uk

After training in Chichester as a theatre technician, James worked as technical manager of the New Theatre Royal, Portsmouth and head of lighting for Cunard Cruise Lines, travelling around the world on the QM2 and the Queen Victoria before returning to set up his production company, JJTS in 2008. He’s been growing the company ever since.

16 and technical favour I event at

I attended my first AGM when I was from the age of 18 I have been the manager for the event, pulling in every have and putting together a high end no cost to Reach.”

It is all about giving people the information and giving them an informed opinion so they can make the right choice for themselves.


TRUSTEE NEWS I am delighted to report that Reach is quickly getting back to ‘business as usual’. Our National Co-ordinator, Jo Dixon, has been in place since January and has made progress on all of the initial objectives we set. One of her first tasks was to make contact with all branch co-ordinators to introduce herself and make sure that when new members join, they have the opportunity to speak to someone near them who can introduce Reach and provide reassurance and contact. This is an important and often overlooked function of the Branch network that we try to provide. There are a few areas where we still need cover - please step forward if you can. Our membership is currently about 600 families which is a significant proportion of those affected by upper limb deficiency, so we can truly claim to be representative. As subscriptions become due, we are encouraging members to embrace the monthly standing order system, so update your email addresses please. The Finance Committee has worked hard with Jo to formulate a clear working budget and I am delighted to report that we were able to approve the Annual accounts for 2011/12 at our Board Meeting in Swindon on 21st April. The accounts show that our commitment to live within our means after a small but significant deficit in the previous year has been successful. Our income was £186,000 and our expenditure £183,000, so on the face of it - happiness! When we analyse our income it is clear that we continue to rely heavily on our many individual supporters and members who raise money from all sorts of one-off events. Income from these sources and subscriptions went up last year by nearly £18,000. Our Fundraising Committee is working hard to ensure we have available a fundraising pack with banners, leaflets, collecting buckets, T shirts and give-aways to make it easy for you all to advertise Reach widely when you organise any events. If you do need anything, please speak with Jo. Income from bigger events fell slightly from £98,000 to £84,000 so overall we stood still, but in this difficult climate that is no small achievement. We kept spending strictly under control with the result that administrative costs fell from £117,000

Join in and make the most of your membership.

to £91,000 and this good housekeeping resulted in a positive outurn. We are filing the accounts with the Charity Commission now and our annual report will be circulated to Members soon.

The Finance Committee is looking at our banking and investment arrangements as well. At the end of August last year accumulated funds stood at £193,000. We are considering appropriate levels of reserves and will be looking at where we can now offer new services to our members. This is an exciting time to be involved and we are delighted to welcome two new trustees, James Jones and Dominic Hamnett, who you can read about in this edition. There is still a need on the board for people with experience in finance and investment and the preparation of funding bids. I know you are out there!

Perhaps one of the biggest changes is the launch of our new website. We started that project more than a year ago and the improvements are long overdue but nonetheless very welcome. Do go back to the site and check it out if you haven’t been there recently. Functionality is so much better. Finally we are planning all of our normal annual activities - the family camping at Tyncae, the Activity Week at Bude and our AGM in Leeds. All the details can be found in this magazine or on the website, so do join in and make the most of your membership and contribute to the big Reach Family.

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MEMBERS’ PAGE

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Music will always find a way to express itself!

www.tinabridgman.co.nz http://www.youtube.com/ watch?v=q5vUIIfZP0s http://www.youtube.com/ watch?v=EJub8M6_P4w

The day he played his first song and sang, I wept tears that he couldn’t see of sheer joy for the music that WILL find a way whatever our physical condition. That grandfather still had an inner vision. I have learnt the most valuable question to ask is ‘How’. There is always a way. Stay curious and let music do the rest.

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Does your school have recorder lessons on the curriculum?

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Why should a change in physicality prevent our expression? I have taught many people of all abilities and ages since then and yet they have been my teachers. They have all shown me so much. One of my greatest teachers was a grandfather who had no physical vision but wanted to learn the guitar so he could play with his grandson.

It opened the door to find new ways of playing and not feeling limited by how I thought instruments should be played just because that was the ‘right’ way. There are no rights or wrongs. I realised all I needed to play music was a true sense of exploring, of truly letting myself ‘play’, It opened up a world of dynamics/ rythmns/harmony in a way I had only glimpsed at before.

This is what I spoke about recently at a TEDx conference. What I didn’t say however was that shortly after writing that first song, I shared my new found joy with someone who caringly enquired ‘but how do you do that with your disability?’ that comment was liberating as I realised that it was not a disability but a new ability. That music would always find a way to express itself.

It took me 18 months to ‘want’ to pick up the guitar and dare to try again but it came after a walk on a spring day, when I felt so full and glad to be alive that I started humming a tune….and I started hearing how I could possibly play the guitar. I went home, re-tuned my guitar and one hour later, I had written my first song since the accident. I was ecstatic. I have since produced a further two albums.

Eight years ago, I lost my hand in a car accident. Before that, I had played guitar for many years and had produced two albums. And now ....… I play more than I’ve ever done before…

TINA BRIDGMAN

EVERYONE CAN ENJOY MAKING MUSIC

There is no need for your child to miss out on this important opportunity for music making. . Reach has a stock of one handed recorders available for hire. Contact Jo Dixon on email: jod@reach.org.uk.


MEMBERS’ PAGE

How to learn the violin Easy, pick up violin in one hand, bow in the other and off you go. Hmm ... not quite that straight-forward for Sydney, but we got there in the end. Sydney is seven years old and was born missing her right hand and lower forearm. She attends the local primary school in Billingshurst, West Sussex. In Year 3 all students learn the violin. Fortunately, a friend mentioned it halfway through Year 2, so we were able to speak to meet the violin teacher in advance to ask a few questions. Sydney’s tutor Janet Litherland-Todd is fantastic! She arranged for the school to lend us a violin over the summer holiday period for Sydney to practise holding etc. She had no experience of teaching a child or adult like Sydney, so was a little unsure how to proceed. At first we tried strapping the bow to Sydney’s little arm with a rubber band – yep - rubbish idea! The reach was not there and it moved around all the time and hurt her arm. Janet suggested Sydney could accompany on the piano, but that was not an option we wanted to take. Then we heard about Adrian Anantawan and were blown away by him (Google him and see his youtube videos). He too is without his right hand and uses a prosthetic attachment to hold the bow. Greatly encouraged, we did some more research and came across TRS inc. (Google TRS Prosthetics) which had all sorts of accessories to help with tasks/activities. I emailed Sussex Rehabilitation Centre (our local limb centre) and asked if they could make Sydney something similar to the TRS violin accessory. They confirmed that it was covered by funding and ordered it direct from TRS inc. Brilliant – Sydney would be playing in no time! We popped down to see Chris Parsons for a cast of Sydney’s arm to be made, and waited for a fitting. On the next visit Chris kindly brought in his own violin and showed us how to attach the bow to the accessory and showed Sydney how to take off and put on her new prosthetic and attachment. It has a special sleeve with a ratchet screw at the end, and is removed by pressing a button. A few final alterations and one more visit and Sydney was ready to go. We picked up the finished arm in half-term and Sydney hasn’t looked back! She can’t pluck and bow (or we haven’t figured that out yet), but she happily bows along, and will have no issues holding the strings down when they progress to that stage. Her music teacher is really pleased with how she is coming along, and I have been lucky enough to sit in on a class, and when all the parents were treated to a presentation at Christmas, it was lovely to see Sydney happily involved, no hesitation and a huge smile on her face.

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MEMBERS’ PAGE EVERYONE CAN ENJOY MAKING MUSIC A bit of modification to his trumpet was all that 17 year old David Muncey needed to enable his musical talent to find full expression. He is a student at Chetham’s School of Music, has a year with the National Youth Orchestra under his belt and looking into the future, a career as a professional musician? Yes it’s definitely on the cards. I started learning an instrument when I was eight. I use my small arm to support the trumpet. I passed my Grade 8 when I was 14 and I enjoy playing in ensembles. I don’t feel at a disadvantage, as I can play as well as other people. I am much less nervous about performing. I have had a supportive and good experience with music. It’s the most important thing in my life. I love playing music all day long as well as doing academic studies. I have just started studying left handed piano and hopefully in a few years I will be playing the famous Ravel Piano Concerto for the Left Hand. I have wanted to go to music college for many years. Most people from Chethams go on to music college. My advice to people is: Don’t let anything stop you playing music. It is a great thing to do and once you have got over the barrier of getting used to the instrument, it is really very rewarding.

On a training day with Birmingham Music Service, Mum, Catherine Muncey, met young musician, Rosie Rushton, who runs a weekly music group in Birmingham for children of any age with disabilities or learning difficulties to help them to access music skills. They can also start individual tuition that can lead on to the child having lessons with a tutor local to their home. It’s at the Birmingham Conservatoire of Music in the city centre. Rosie seemed very competent and would, I’m sure, be a committed and inspiring person for kids to come into contact with. The web address is www.melody.me

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Music is the most important thing in my life.

The North East branch went to see Cinderella in Pantomine at Whitley Bay Playhouse at Christmas; fun and laughter had by all!



MEMBERS’ PAGE LIFE STARTS NOW ! Bethany Ehlen-Batt turned 18 in August and her life has taken off! In 2012 she went to Germany with a GermanWelsh schoolfriend, to the Algarve and to Uganda combining geography with volunteering. She successfully completed two challenging D of E Gold Award treks in Snowdonia and the Lake District, started University (Psychology, Bangor University), passed her Driving Test (in July, at 17) first time (manual car, no adaptations) and drives a bright-red Ford Ka car.

www.youtube.com/ watch?v=Nn9zkoRb4ck

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Booking forms and ticket prices are available from the website or by contacting Reach HQ.

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The Reach Family Weekend and AGM is being held at the Leeds Marriot Hotel, 4 Trevelyan Square, Boar Lane, Leeds, LS1 6ET.

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It will be a fabulous weekend with some really exciting speakers lined up for the conference including Prof Simon Kay. Plus some fun activities for the children and other great things in the pipeline - too early to confirm!

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Yes, my daughter Beth, an accomplished horserider and First-Year Psychology Student at Bangor University, is working on weekends as a parttime barmaid! Who’d have thought it, eh, as we set out, all those years ago?

To earn extra cash (to pay for petrol) - among these varied activities and occasional studies she works on weekends, part-time, at a Welsh Country Inn. The Gors Bach Inn is a traditional licensed eating-place, a small quiet place with a log fire, a short drive away. She works behind the bar, pulling pints, serving drinks to the customers.

25-27th October 2013

Family Weekend AGM

So 2012 was altogether really quite a remarkable year for Beth. She’s ‘too busy’ to write for the magazine herself. Teenagers, eh! Yes, she continues to ride horses a lot whatever the weather, takes paying customers on hacks and beach-rides from Llanddona Riding Stables on Anglesey and volunteers for Riding for the Disabled (RDA). She’s a team member of Bangor University Riding Club, and plays for Bangor University Women’s Rugby Club! (I had tried to persuade her to join the Dramatic Society, because being on the stage is a lot safer than playing Rugby but she just doesn’t listen to me.)

Beth went down to Aberystwyth as part of the Bangor University Riding Club team, and here she is - on YouTube - at the Aberystwyth Equestrian Centre, jumping a clear round on a horse called 4Sox:

Reach Activity Week

22-29th August 2013

This year, forms are There are for Reach

it is being held in Bude, and booking available from the website or HQ. a few places at this point available members aged 10 - 18 at 22.8.13.


How do I join? Join the conversation on RareConnect at http:// www.rareconnect.org/en/community/dysnet

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So you can now see why RareConnect is important - by sharing experiences with others across borders, not only do you have the opportunity to help someone in another country who may not know anyone else with a limb difference, but you can exchange knowledge and find out how others live. If you need advice about an issue, someone on RareConnect may have a solution you hadn’t thought of!

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Limb deficiencies of course have many different origins. Amniotic band syndrome is generally thought to be just a random occurrence, but if

‘Rare disease’ identifies conditions that have experienced a lack of research and investment because of their low incidence. Organisations such as EURORDIS highlight these conditions, including limb deficiency, to improve the quality of life of people affected through advocacy, drug development, networking patient groups, and raising awareness.

But my child doesn’t have a rare disease!

In some cases, there may be involvement of other parts of the body such as in TAR Syndrome, where a patient is missing a radius bone but also has a low platelet count. Research into genetics needs to be funded, and there is a global industry around orphan drug research. Of course, drugs can’t reconstruct a limb, but it may be that research developments can one day help to correct a genetic anomaly.

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It’s safe and moderated and is a great way to make connections. It is funded by EURORDIS and NORD, the European & North American rare disease organisations.

RareConnect is the forum that aims to help us make connections with similar families in other countries and share our stories, experiences and tips.

What is RareConnect?

your child is born missing part or all of a limb, there may be a genetic reason, even if they are the only person in the family affected.

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EDRIC’s chairman, Geoff Adams-Spink, recently spoke at the Reach AGM. EDRIC’s membership now numbers 19 across Europe including our colleagues at Assedea in France and Raggiungere in Italy.

Reach was one of the first limb difference organisations to join EDRIC, a pan-European organisation that aims to bring together charities and support groups that help families affected by dysmelia, the collective medical term for limb deficiency.

RARECONNECT

WHAT A FANTASTIC GRANDFATHER My daughter Scarlett is a REACH member and in December her Grandfather, Brian Truepenny, celebrated his 70th Birthday with a party. Instead of presents he asked for donations to be split between REACH and Cancer Research UK. Thanks to generous donations from family and friends, Dad’s party raised £370 for both charities. My Dad is immensely proud of his grandaughter and her determination. He is also very aware of the invaluable support that REACH, its members and the magazine ‘Within Reach’, has to offer parents. We are very proud of him too! Nicky Truepenny-Wray.

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SPORTS PAGES Medals for Paralympian Susie Susie Rodgers won three bronze medals in the Paralympic Games. She was part of the Freestyle Relay team with Claire Cashmore and Louise Watkins. She has also been very successful academically achieving a First Class Honours degree in three languages. She now works for the British Council in London where she lives and trains.

India won a silver medal in the British Championships at Newcastle. She is with the Salto Disablity Gymnastics Team. She would love gymnastics to be in the Paralympics but unfortunately, it is not there yet. Hopefully it will be included in the future, as she loved the Olympic Games.

Gymnastics competition success for India

More donations will be on their way, which my Gran’s pensioners’ club has donated. We would love to meet up with everyone at the next annual Reach family get together. My children went to the Dublin one and had a ball.

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She has also won a Vision Express competition promoting glasses for children, as wearing glasses does not stop her from achieving her goals. A trip to Disneyland Paris is our prize and she will be on billboards in Oxford Street, London. I’m so proud of her.

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I started doing gymnastics when I was six years old and entered competitions, Then I had a break and now I am back and I am going to carry on with it. My coach is a physiotherapist

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and she give me ideas and I am up for a challenge. Lots of people are interested in doing gymnastics and competing and I honestly don’t know why it is not a Paralympic sport. My mum and my coach are trying to get it included.

I like artistic gymnastics, the floor work, the beam, the vault and bars but as my left hand has no fingers I have to bend my wrist. You need to be strong and confident.

I have to find my own way around the fact I have no fingers on my left hand

Susie has an upper limb deficiency, a lower limb deficiency and deformities to the right foot and knee and suffered a torn cartilage three months before the Games, so as you can imagine, we were very proud of her, and we hope the family of Reach will be too.

My advice is just go and enjoy it. I love the competitiveness and the problem solving side. India Atkinson


SPORTS PAGES Inspired by the Olympics to get sporty Anna wrote this report of Sportsfest for school. On December 3rd I went to Paralympic Sportsfest in Guildford. I tried out lots of Paralympic sports like judo, archery, running, throwing, pistol shooting, table tennis, tennis, horse riding, and cycling. The riding was funny because it was an electric horse called Queenie. There were lots of Paralympic and Olympic athletes teaching and helping with the sports. I got some of their autographs and they told me about the sports. One of them I saw was Ben Quilter (Judo). One of my favourite sports was table tennis. The coach was in a wheelchair and I’d met him before. He told me that there was someone with a little arm like me, who was in both the Olympics and Paralympics playing table tennis. I got to see some of their winning medals from London 2012 and other Olympic games. I really enjoyed my day and it was encouraging to see lots of people with different disabilities doing lots of different sports. Anna Welch ○

Candida’s email: candidasullivan@yahoo.com blog: http://underneaththescars.blogspot.com/

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BRANCH NEWS SOUTH WALES Hello. My name is Melissa Beesley. I am the new Branch Co-ordinator for South Wales. My husband and I have been members of Reach since just after the birth of our eldest son, Owain, in March 2010. We have attended Reach parties in the past and done some fundraising. When the opportunity came up for someone to take over the Branch Co-ordinator role I was keen to fill it, as I wanted the chance to become more involved and to get to know local Reach members better.

Our Christmas party this year was held at The Village Hotel in Cardiff. The children enjoyed taking part in a variety of Christmas activities including cake decorating and face painting. Us parents had several cups of tea and a good catch up! We were also very lucky to be visited by Father Christmas. All of the children had a snow globe gift and Father Christmas even had time to sing a couple of carols with us!

But before I say anymore, I must say a big ‘thank you’ to Nicola Vaile who has co-ordinated the branch for several years. She has built some fantastic relationships over the years and I know our members greatly value the work that she did. ○

I look forward to getting to know loads more of you and being more involved with the charity. If anyone wants to get hold of me, please do. And keep an eye on the ‘Branch News’ pages – I’ll be updating you regularly.

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pay £14.95 in year 1 including VAT. And what’s even better is that Reach receives a £5 donation for each customer signed up. From Accountants to Zumba teachers, join the thousands of businesses going mobile in minutes. Great for charities too, check us out on your smartphone: reachcharity.tel

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ASSOCIATE PARLIAMENTARY LIMB LOSS GROUP Reach and STEPS have asked for a Murrison Style Review of the NHS Children’s Limb Service in England and Wales Reach has submitted a paper to the Associate Parliamentary Limb Loss Group in support of the STEPS Charity paper, ‘The Supply of Prosthetics to Limbless Children and the Paralympic Legacy’, backed by the Meningitis Trust. The charities are also concerned for the future of the NHS children’s limb service in England and Wales. Over the last few years the NHS Limb Service has been consistently affected by financial constraints and with declining staffing levels. The children’s limb service has taken the brunt of this decline due to it’s minority status and complex needs. Although the numbers of children who are looked after by the Limb Service are a small percentage of the total patient cohort their needs are generally disproportionate to their adult counterparts.

2. Shortage of Skilled Prosthetists. It has often been reported by Associates in the APLLG Meetings that Prosthetists are leaving the service and not being replaced. It has also been reported that the numbers enrolling on university courses are falling. This is causing a critical skills shortage within the Limb Service and will only worsen over the coming years. We do appreciate that with the introduction of technicians course in the South this is being addressed but there is still a lot more that can be done.

Future developments in the field of prosthetics are likely to come from the USA, partly due to provision for the wounded military personnel coming back from ‘They don’t tend to conflict zones such as Afghanistan and Iraq. have the same colour

as my arm. Sometimes they’re darker ones, or lighter ones, or orangey…my hands look two different colours’

Prosthetics need regular adjustment as the child grows, children’s abilities are developing requiring different types of prosthetics and during their school life they are trying various activities such as sports, crafts etc which require various attachments. Some children, particularly around the teens, become very self-conscious and high definition silicone prosthetics are often declined on the NHS. There are two main concerns regarding the current Limb Service: 1. Financial Constraints. With tighter each fiscal year the often seen its budget go to and mainstream parts of the its considered better spent.

as sports, hobbies and education all because the NHS cannot afford to provide them with an effective prosthetic limb.

budgets becoming limb service has more high profile NHS trusts where

As explained above children’s limb service has its added costs due to the high demand of its patients. Less money means children will be excluded from taking part in the activities they wish to and their peers take for granted, such

New developments are emerging which may well benefit our children but will they have a Limb Service able to provide them with these new technologies. At the moment we believe that the answer is “NO”.

We wish to ensure that now and in the future there is a well-funded local Limb Centre that will provide the best prosthetics, fitted by world-leading experts, to enable our children to get the most out of life and be our future. The Murrison report reviewed the Limb Service for our Service Veterans and made a number of recommendations. Out of this report £15 million was made available by the Government to implement its recommendations. We recommend that the APLLG Secretary of State asking them to Murrison style review of Children’s in the NHS and ensure a world for our children of the future.

write to the commission a Limb Services class service

Gary Phillips, Vice Chairman

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STOP PRESS SUCCESSFUL NETWORKING AT CHANNEL 4 MEANS...

...PARALYMPICS TV STAR ALEX BROOKER IS A NEW REACH AMBASSADOR

I want to help children who have similar disabilities to myself. Hopefully they will relate to me and gain something from my involvement. ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○

He joined Channel 4 fully in March 2012 and reported at the Paralympics Opening Ceremony, interviewing Boris Johnson and the Prime Minister in front of a TV audience of 11 million people. After this, Alex featured on the award-winning The Last Leg with Adam Hills as a co-presenter alongside Adam and Josh Widdicombe every night. Following its success, the show has returned for 2013. Alex also featured on screen on Channel 4 in 2011 as a reporter on That Paralympic Show and subsequently as an athletics reporter at the 2011 BT Paralympic World Cup and a football reporter at the 2012 BT Paralympic World Cup. Alex earned a BA/Hons Journalism degree from Liverpool John Moores. After university he worked part-time at the Liverpool Echo as a Junior Sport Writer before moving to the Press Association to become a sports journalist.

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With his impressive fount of knowledge, Alex acted as chief writer on the official guide to the 2012 Paralympics, which included comprehensive venue and sports guides, facts and figures, features on key athletes to look out for in London and a look back at great moments from past Paralympic Games.

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They did! They had an amazing time meeting the stars of the shows. “We were all really looking forward to doing some serious networking and helping raise the profile of Reach and it was a very successful evening,” said Siân.

With Paralympic broadcast rights secured for Rio 2016, Jay Hunt and Katie Piper invited Reach to ‘party with the stars and creators of the programmes blazing a trail across British Broadcasting.

Siân Brooks, Dom Hannett and ambassador Kelly Knox were determined to raise the profile of Reach when they visited Channel 4 recently. The TV channel claims it is leading the way ‘in risk-taking and frank portrayal of disability, stirring up controversy as well as ratings. The Channel that brought us 4GoesMad, the Undateables and the Paralympics now aspires to lead a fundamental change in the way we feel and talk about disability.’

Alex burst onto our screen after he successfully auditioned for Channel 4, having seen their advert for the Half Million Quid Talent Search to find new disabled talent for the 2012 Paralympics.

“I’m looking forward to being an ambassador for Reach and the main reason I want to get involved is because I want to help children who have similar disabilities to myself. Hopefully they will relate to me and gain something from my involvement,” he said.


THANKS Business partnership leads to an exceptional outcome for Reach

It was down to the team to come up with a fundraising strategy. Innovation was key, with people identifying opportunities to raise money and maximising potential wherever possible. They took a four pronged approach to the challenge: * Looking at potential dates they could tap into – such as corporate golf days, functions etc. * Considering ways, big and small, they could personally raise money – from fining people whose mobiles rang during meetings to dressdown days and endurance challenges. * Organising a fundraising event – a quiz and raffle at Rovers Memorial Ground, Bristol. * Clubbing together to donate the first £50 of each sale the academy made in their day-to-day business activities to a fundraising pot on a monthly basis – raising over £800.

Commenting on the team’s achievement, Lee Gwilliam, Jelf Account Executive, said: “This experience has demonstrated not only that fundraising with corporate partners benefits charities such as Reach, but provides businesses like Jelf with a way to give something back to the communities they work in and increase teamwork and personal development within the business.”

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The hard work, imagination and determination of the team saw the academy smash the target they were originally set and in total raise an outstanding £20,049.44, half of which has been donated to Reach.

The cheque was presented to Reach at the Jelf annual sales conference at Celtic Manor resort by the group CEO Alex Alway, Deputy Chairman Chris Jelf, and members of the Sales Academy. Lee Gwilliam Account Executive Jelf Insurance Brokers

Our daughter Celia, aged 7, recently saw the Reach Facebook post asking for people to submit things for the magazine. She went away and wrote the paragraph above! Celia was born without her lower left arm - she is a very active, happy little girl. She loves gymnastics and swimming and we have been very proud of her recently as she can now ride her bike without stabilisers! Paul Brook [paul-brook1@sky.com]

Just over 12 months ago, The Jelf Group’s Sales Academy Class of 2012 was set a charity challenge to raise £10,000 for worthy causes. The group decided to work with two charities, one being Reach.

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THANKS Oh dear! In getting to grips with new systems and old practices, details of all your wonderful donations to Reach have been mislaid - thankfully after the funds were banked and the individuals thanked

Here are just a few examples - with scanty details of your great generosity. Please accept our apologies if you are not listed below! Sadly, a number of Reach families have lost loved ones this year, and have donated to Reach in their memory including: Jo Butler, Mike Snelling and Roy Smith. We really appreciate this thought for Reach at such a difficult time.

Linda Stokes raised over £400 through a clothing sale.

Camberley Brownies raised £320 with £166 matched from Microsoft.

£500 from the premier League

Roger and Joyce Greenhow £25 lent donation Charlotte Fielder continues to raise a regular amount for Reach through talk and events - many thanks!

Adam Pricket ran the Paris Marathon and raised £900 Sarah Mole completed a Triathlon and raised £2117.

£75 from IT farm, Manchester £10,000 raised by employees at Jelf Insurance

City Bypass, Edinburgh entertainers £100 ○

Our daughter Sarah was born in 1973 with her left hand missing. Reach wasn’t in existence. We joined as soon as we found out about Reach, I think when Sarah was about 6 or 7. We have been members for years and have always tried to support it. My husband ran the London Marathon over 20 years ago for Reach. I have now completed seven open charity treks and have always supported Reach along with other children’s charities. I have trekked the Great Wall of China, the Inca Trail to Machu Picchu, trekked to Everest Base Camp, the Annapurna circuit, trekked in the northern hill villages of Vietnam, trekked in Jordan to Petra, and the last one trekked in Tanzania with the Masai Mara. We live in Walton on Thames, Surrey and Sarah lives on the Welsh side of Shrewsbury. She owns and competes on her two horses, mainly dressage and eventing. She runs her own business, drives, skis and generally lives life to the full. She has a lovely fiancé and we are very proud of her. Dawn Jackaman

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Dear Reach As you know I shaved my hair off to raise money last September. I am very glad to say that the final amount I raised was £2140! I was never expecting this much as I was worried that I wasn’t going to get to my target off £1,000. I decided to split the money raised between two charities, Reach because my sister Emily Tisshaw was born with her lower left hand missing and Diabetes UK as my eldest sister suffers from this disease. I was on the front cover of two local newspapers, Lynn News and the Citizen, and featured on the Lynn Online website. I received many donations in the post which were sent with lovely written letters. I am very grateful for everyone’s support as I know many members of Reach sponsored me. I still can’t believe the reaction I got in my local area, people I don’t know would come up to me and hand me donations, something I never expected! Thank you for all your support over the past few months, the money could not go to a better charity. With love, Annie Tisshaw

Congratulations to Sarah Mole for completing the Good Friday Triathlon

NORTH WEST BRANCH

and raising such an amazing amount for Reach. We are often surprised by the total, and hers, including gift aid, is £2,116.74 which is a phenomenal amount and we are really very grateful. We and and their

As well as raising money for two great charities I also sent my hair off to a trust which makes wigs for children who have suffered from such diseases as cancer.

use all the donations we receive wisely, every penny goes to support the children families who are members of Reach so on behalf, THANK YOU!

Caelainn Traynor-Field had a cake sale at her primary school, St Alban’s RC Primary, in Bewsey Warrington and raised a magnificent £67! Hannah Connor, mum to Joseph Lovelady, cycled from Liverpool to Chester and raised £80.

CAMP TYNCAE Tregaron, Dyfed, 24th-27th May 2013 Every year, Reach members Rob and Dawn Davies run this weekend for families at their home in Wales. Sponsored by Reach, it offers fabulous good camping fun with children’s activities laid on and is a great way to meet other Reach families.

PRIZE DRAWS The winners of the last two Quarterly prize draws are: Oct-Dec 2012 - Mr I and Miss L Connal, Co Cavan, Eire Jan-March 2013 - Mr and Mrs Galmiche, London How it works: Members who donate more than £2.50 per month are automatically entered into the draw for a £250 prize every quarter. In fact, the more you donate, the more chances you have of winning!

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BRANCH NEWS BELFAST NORTHERN IRELAND

Staff from the limb fitting centre at Musgrave Park Hospital in Belfast have formed a Relay Team to compete in the Belfast Marathon on May 6, running on behalf of Reach. The team consists of Gavin Campbell, Lynne Chalmers, Terry Crowe, Peter Taylor, Karen McDonald and missing from picture, Claire Wilson.

The Northern Ireland Branch Easter Party held at Musgrave Park Hospital

If you are training or competing to raise funds for Reach, we can let you have a Reach branded running vest and other materials to help you. Contact Jo Dixon at jod@reach.org.uk ****** It’s easy to donate just text “REAC11 £10” to 70070. The full amount goes direct to us.

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I can’t see us getting any medals, haha, none of us are particularly good runners, but it will be good for raising money.

FRANK’S HANDY GADGETS! I sit on disability living allowance tribunals and over the past 10 years I have become aware of a wide range of gadgets and I thought it would be a good idea to start a database of gadgets that might be of use to members of Reach. Here is my first gadget which has had a major positive impact upon my life. Throughout my life, I have found the most challenging thing for somebody with no hands to do is to wipe their bottom! The solution that I have found was offered by a very understanding and caring occupational therapist who found funding to buy me a Clos-o-mat toilet which has a combined bidet effect which squirts warm water onto your bottom thus making sure you are perfectly clean. This toilet does not come cheap but I suggest that it is essential for children missing both hands and so encourage parents to approach social services or the Reach bursary. If you have any gadgets that help you in your daily life let us know, send us a photograph and a short explanation so that we can pass on your handy hints to other members of Reach. frankl@reach.org.uk or 07594965221

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BRANCH NEWS

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We had arranged to meet at 10.30 am and Cheryl got us all into our reserved seating area, (no mean feat). As you’d expect, before we’d had chance to settle, the youngsters immediately shot off in various directions, as they were dying to play hide and seek and explore the soft play climbing areas and find the long slide.

Ara Couligian reporting for Reach NW, Warrington. ○

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In the meantime us parents, as well as the ‘older’ members, got chatting over cups of tea and coffee, remaking old acquaintances and mixing with and making the new members feel welcome. We all got on well, moving around the tables to meet all and to compare and exchange our experiences. It was refreshing not to feel like the odd ones out and I think others felt the same way too. So a big thank you to Cheryl for organising it for us all.

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Have a think and come up with some bright ideas for fundraising. The ‘d’ is optional! It has to be fun-raising as well!

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If it is hard for us to believe Sue is no longer with us I can only imagine how hard it must be for her family and close friends. Sue has touched many, many lives; long may her memory proudly and fondly live on. Viv Ibbotson, Norfolk

Whenever I and my colleagues approached Sue to ask if she would like to join us at study days, exhibitions and conferences to represent Reach, she always immediately agreed. As an Occupational Therapist at Sheffield’s Mobility and Specialised Rehabilitation Centre for over 20 years (now retired) I feel privileged to have known Sue in a work-place capacity as well as socially - raising a glass or two when relaxing after a busy day at a conference.

I have had contact with Sue since she first took up her post with Reach and can only echo everything that has been said about her – hard working, knowledgeable, supportive, always with the children and families of Reach at the very heart of what she did.

Like everyone else who knew Sue, I was so saddened to hear that she had passed away.

SUE STOKES

Towards the end of February, Cheryl Danson (our highly skilled organiser) organised a party at Jelly Beans, which is a play centre in Warrington. About 30 people, of all ages, turned up and there were a few new faces as well as two new baby members (4 months old)!

Please take lots of photos and send me your news and views in good time for the next issue of Within Reach - Jane the Ed

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