together issue 6

WEAR YELLOW AND SHINE!

for Shine AwarenessWeek 2012

DANNY MILLSSet for Masterchef

stardom!

Registered Charity No. 249338

TogetherSHINING BRIGHT! – Olympic Torchbearers 2012

Inside this issue

BETTERLIFEDISCOUNTfor all Shinemembers

INSIDE:

Shine_Together_AW_Layout 1 23/08/2012 11:59

Scan to download the free WheelMate app

www.coloplast.co.uk

Play your part and start adding locations today, so you can be in charge when you’re out and about. The more locations you and your fellow wheelchair users add to the WheelMate™ app or website, the more useful WheelMate becomes.

Wheelchair users told us that finding clean, accessible toilets is often a major

challenge when they’re out and about. WheelMate is designed to change that

by letting users around the world create an up-to-date database of accessible

toilets and parking spaces.

WheelMate is available now as a free smartphone app and an online platform. You

can search, add, rate and comment on locations when at home or on the go.

Created by Coloplast – Powered by you

Learn more and start adding locations today at WheelMate.com

Know the best accessible toilets and parking spaces in your area? Share your knowledge

www.coloplast.co.uk

The Coloplast logo is a registered trademark of Coloplast A/S. © [2012-04] All rights reserved Coloplast A/S, 3050 Humlebæk, Denmark.

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Welcome to Together

3

CONTENTS

Submission dates forAutumn editionRegister of interest to submit:28st September 2012Final date for submissions: 19th October 2012Publication date: 2nd November 2012

Welcome ...

Editor

All enquiries and comments to:Together Shine, 42 Park Road,Peterborough,PE1 2UQTelephone: 01733 555988Textphone service: 01733 [email protected]

Please let us know if you are happyto receive future mailings by emailas this saves on postage and helpsthe environment.Email: [email protected]

Cover photo: Danny Mills in training for the firstArchie Mills Memorial Challenge. Photo: Tom Scott

... to the Summer edition of Together! Despite theterrible weather we have all been experiencing,the news, stories and information here should puta bit of Shine back into all of our lives.

In a year of such high profile sporting events,including Euro 2012, the Tour de France and, ofcourse, the London Olympics and Paralympics,we are delighted to include stories of how some ofour members are involved.

This Summer 2012 edition is our secondsupporter copy, many thanks to Coloplast forpartnering with Shine in this way. You can readmore about Coloplast and the services they offeron pages 18 and 19.

The magazine is packed full of all the regularinformation including Gill Yazʼs health advice(page 13), Gobiʼs membership news (page 14)and some of our fundraising achievements overthe last few months (page 16).

If you would like to share your views, photos ornews please do email me [email protected] - Iʼd love tohear from you.

P4 NewsP8 Folic films set

to flyP10 Torchbearing

newsP11 Louise Hunt -

Paralymplanp12 Torchbearing

Newsp13 Shine Health

AdviceP14 Gobi’s gossipP16 Fundraising

news

P18 Advertisment Feature

P20 Focus on Shine Cymru

P22 Benefits explained

P23 Northern IrelandP24 TributeP26 Shine Adult

Members Meeting (SAMC)

P27 Events


4

This event is the first Archie Mills MemorialChallenge, which Danny is attempting in memoryof his Son Archie, who had spina bifida and diedten years ago this year. Danny is well into histraining schedule and last month completed theLeeds 10k – cycling to and from the event fromhis home in Harrogate! To donate please visit:www.justgiving.co.uk/ArchieMills

You will also be seeing a lot more of Danny thisAutumn. The former England and ManchesterCity footballer has been confirmed as part of theline up for this yearʼs Celebrity Masterchef. Dannyis really looking forward to the opportunity to bringmore publicity to Shine, ʻWeʼve never had abetter chance to really let people know more

about Shine, Iʼll be doing all I can to maximizethis opportunity for the charity.ʼ

Look out for the new series of CelebrityMasterchef which begins in the next few weeks.

News

Shine staff changes• Naomi Marston is the new Development

Manager for the London & South Region. • Emma Enfield, a qualified Occupational

Therapist, is changing from her Supportand Development Worker role to developOccupational Therapy here at Shine.

• Warren Sangiorgio is the new ShineFacilities and IT Officer.

• Melanie Hayes is the latest SDW to join theShine Cymru team.

• Hilary Franklin (London SDW) is moving onto pastures new, and will be sadly missed.

And finally ...Shine’s Principal Health Adviser, RosemaryBatchelor, will be retiring in July. Rosemary hasmade an enormous contribution to Shinemembers and families, as well as the globalspina bifida/ hydrocephalus community. Herprofessional expertise and wicked sense ofhumour will be greatly missed.

Danny Millsset for Masterchef stardom!Shine Patron, Danny Mills, will be cycling astaggering 200 miles from Leeds to London thisSeptember. The next day Danny will thencomplete the Olympic-Plus distance of the VirginActive London Triathlon.

Andy’s Handy TipsA web-developer with spina bifida has createdan online resource to assist disabled people.Andy Stiller, 41, from Brighton, has createdthe website www.disabilityadvice.infobecause of his own experience:ʻSince becoming a wheelchair user 14 yearsago, I have been constantly frustrated by theshortage of useful information for disabledpeople. Disabled people and their friendshave a huge amount of knowledge andexperience. The aim is to share informationand reviews on venues, services andproducts – and practical tips and advice tomake life easier.ʼDisabled people and their families and carers are invited to contribute to the site. For more visit www.disability-advice.infoor contact Andy on E: [email protected] T: 07521 177629


5

ʻDoing Sport Differentlyʼ is a comprehensiveguide to accessing sports and leisureopportunities in your area. It is written by andfor people with lived experience of disability orhealth conditions, to inspire involvement insport and fitness and improve access tograssroots sport.

ʻGive it a read – especially if you donʼt thinkexercise is for you. It may change your life.ʼ -Baroness Grey-Thompson DBE

Download your free copy:http://www.radar.org.uk/publications/doing-sport-differently/ Visit: www.disabilityrightsuk.org

Spring into Action!Three Local Associations got together in May to share their experiences and ideas at the Springinto Action! event.

Based in Southampton, the day was facilitated byShineʼs Support and Development Worker, AngieCoster. The Southampton and District Spina Bifidaand Hydrocephalus Association, trustees of ShineSurrey, and Somerset Shine discussed issuessuch as fundraising, publicity, social activities,sharing information, distributing welfare grants,membership, and constitutional matters.

These Local Associations work as independentcharities, but the opportunity for ʻcross-fertilisationʼwas greatly appreciated, with those attending keento take away some of the suggestions that wereshared. On-going links have now been forged andthese Local Associations are ʻspringing into actionʼto make things even better for their members in thefuture. We at Shine look forward to working inpartnership with all concerned.

Doing sportdifferently Shine’s partnership

with BetterlifeHealthcare is tocontinue throughout2012. This means that Shine members can stilltake advantage of discounts on healthcare aids,disability aids, and mobility aids available throughBetterlifeʼs mail order and on-line services.

Shine members have the exclusive opportunity toget free next-day delivery on all orders over £30.Shine receives a donation for all orders placed –so thatʼs two good reasons to visit their site today! To view their products, go towww.betterlife.co.uk To order call 0800 3289338 and mention Shine when ordering.

Betterlife discountfor Shine members

Shine, Shine and Shine again!Last year Somerset Shine joined us in ournew identity and outlook. Now we aredelighted to welcome Bolton and Bury Shineand Shine Surrey.


News

6

If you’re a member of Shine

we need YOUR views

Shine’s Hydrocephalus Survey received anamazing response, with over 1200 replies ... so a huge thank you to everyone who took time to complete it.

Over the coming weeks weʼll be analysing thedata so that we can prepare a report about thechallenges that our members face. What isalready clear is that hydrocephalus affects peoplein so many different ways and as a result

peopleʼs feelings about issues like shunts andmedical services vary enormously.

Your input makes pieces of work like this and lastAutumnʼs Spina Bifida Survey incredibly valuableand worthwhile, so thank you once again.

The two winners of the cash prizes on offer wereJordan Odgers, who won £100, and RuthDavison, who took home £50 – well done!

Shine would love to hear the views ofmembers young and old, families, peoplewith spina bifida and or hydrocephalus,and professionals about ourMembership Scheme which has beenrunning for just over a year now.

Please take a few moments to fill out thisshort survey so that we know what you thinkand what youʼd like to see in the future - andweʼll do our very best to deliver what you need.

One lucky winner will win a bag of Shinegoodies after all surveys are in. The closingdate for the survey is 30.9.2012 Typewww.bit.ly/ShineSummerSurvey and fillout our short survey online.

The Right to ControlThe Government has just issued an

England-wide consultation on proposalsto extend the ʻRight to Controlʼ pilot for12 months. ʻRight to controlʼ looks atensuring that disabled people havechoice and control over their daily lives.

Shine would like hear your views … contact Kate Thomas on 01656 864102 or

email on [email protected] further information.

Alternatively, you can read and download theconsultation documents and find out how to takepart by visiting the DWP website at:http://www.dwp.gov.uk/consultations/2012/right-control.shtml.

Outstanding response to Shine’s hydrocephalus survey

West Midlands Family DayThere will be a Family Day at Sandwell Valley Park, West Bromwich on Thursday 30th August from 11.00am - 3.00pm. For details contact: Geraldine Long – T: 01789 763090 E: [email protected]


As part of our preparationsfor Shine AwarenessWeek 2012, whichincludes World SpinaBifida and HydrocephalusDay 2012, we areintroducing SammyShine. Sammy will be urging everyone to WearYellow and Shine! and wants YOU to get involved!

Sammy will be sharing lots of unique advice abouthow you can get involved. Heʼll be asking you tohelp get your school, work place or communitygroup to dress up in yellow for Shine. Look out for Sammyʼs updates on Facebook and on theShine website.

Itʼs easy to find something yellow to wear, and itʼsa very effective way of raising awareness andfunds as part of the first ever Shine Spina bifidaand Hydrocephalus Awareness Week.

A key date for you to focus on is Friday 26thOctober. This is the last day of the first term inmost schools and it happens to fall during ShineAwareness Week. This means that it is an idealtime for you to ask a nursery, play-group, school,or college to let everyone come in wearingsomething yellow and asking them to make asmall donation to do so. We want as many peopleas possible to Wear Yellow and Shine!

We can provide anyone having a ʻWear Yellowand Shineʼ event with posters and publicitymaterials to make the day a great success.

Dates for your diary:• Spina bifida and Hydrocephalus Awareness

Week 2012: October 22nd – 28th 2012

• World Spina Bifida and Hydrocephalus Day: October 23rd 2012

• Last day of term:October 26th 2012

To find out more please contact Hannah Wysocki on T: 01733 421351 E: [email protected]

7

The Shine AchievementAwards will be presentedat the Annual GeneralMeeting on 29thNovember. As well as thecoveted LifetimeContribution Award therewill be a new Award, theJohn and Lucille vanGeest Award, for ‘Outstanding Service tothe Shine Community.’

The other Award categories are:• Shine Young Achiever (for a young

person up to the age of 25)• Shine Fundraiser of the year 2012• Shine Young Fundraiser of the year

2012 (under 18)• Shine Volunteer of the Year• Shine Professional Award• Shine Cymru Achievement Award• Shine Northern Ireland Achievement

Award

To find out how you can nominatesomeone for one of these Awards go towww.shinecharity.org.uk/shineawardsor call Hannah Wysocki on T: 01733 421351

The International Federation of Spina Bifidaand Hydrocephalus (IF) is holding aphotographic exhibition in the EuropeanParliament, Strasbourg to coincide withWorld Spina Bifida and Hydrocephalus Day.

Eleven of the photographs will featureShine members photographed by ShineMarcoms Coordinator, Tom Scott. All of thephotos are intended to portray a positiveimage of life with spina bifida and/orhydrocephalus. The exhibition will be ondisplay from 22nd – 25th October 2012, andis a great opportunity for Shine to receiveexposure on an international level.

European spotlight for Shine

Let’s celebrate achievement –your nominations are needed

Wear Yellow andSHINE for ShineAwareness Week 2012


Our youngest son, Matt, is now 20. We were devastated when, newborn, he contracted

meningitis. We prayed, and gradually he recovered.

At three months my wife noticed that Mattʼs head was swollen. He was diagnosed with

hydrocephalus and once again we faced our worst fears.

At Newcastle General Hospital Matt was fitted with a shunt – we will always be grateful to the

team there for what they did.

We knew nothing and were worried and scared. It was at this point we turned to ASBAH (now

Shine) Adviser, Moira Foggo. She gave us invaluable support, advice and encouragement.

Matt developed normally but had several shunt problems. When he was four Mattʼs shunt

failed on a family holiday in Spain. The whole week was a nightmare. Matt had a new shunt

fitted in Spain, but complications developed.

Matt had two more shunt revisions in a short period of time. We tried to go abroad again, to

Holland, when Matt was 8, but once again, his shunt failed. This time he had parted the tube

in his abdomen, probably going down the water slide. We turned to Moira and Shine many

times as Matt grew older and we have always felt part of the Shine family.

Mattʼs shunt settled in his teens and he became a very good sportsman, even playing two

seasons at Middlesbrough F.C. Academy. He was the first Sports Captain when his school

became a Sports Academy. His bedroom has enough trophies for us to charge an admission

fee for viewings!

Academically Matt excelled at certain subjects and struggled with others. He had to work

extra hard to achieve good GCSE and A Level results. He has a fantastic attitude and gets

there in the end.

On leaving school Matt sustained sports injuries and realized football was probably not

his future. He was, however, encouraged by his college to do voluntary coaching in the

community.

We were proud he was doing something worthwhile, but had no idea how well he was

doing. He volunteered at the 2010 Blind World Cup in Hereford and returned home ʻbuzzingʼ!

Matt soon started receiving many prestigious awards for his coaching too.

Matt is now at Leeds Metropolitan University studying for a BSc in Sports Coaching

and recently applied for a summer coaching job in Cyprus. With our holiday history this

caused slight panic. Guess who we turned to for advice on Neuro Surgery in Cyprus, thatʼs

right – Shine!

Without us knowing, Mattʼs brother Daniel nominated him to be an Olympic Torch Bearer.

On Sunday 17th May (Fatherʼs Day), Matt carried the Olympic Torch in Hartlepool.

We watched our precious youngest son carry the Olympic Flame thanks to his older brother;

It doesnʼt get any better than that!

Folic films set to fly

8

My day as an Olympic T

Dear Together,

From Russell and Jenny Carnelley


er;

We left home at 6am for the 45 mile journey toHartlepool Rugby Club.We were met with an enthusiastic welcome andbacon sandwiches! The Olympic staff and David,from the sponsor Samsung, gave me an equallywarm welcome. I met my fellow torchbearers; we had an instantbond, all of us dressed in our white Olympicuniforms. I was number 37, the last in our batch,and we boarded a shuttle bus to take us to meetthe Torch Convoy.We arrived to a police escort, the sponsor floats,and the dancing girls, ready to hand out freebies tothe spectators. The first torchbearer got off the busand met the previous torchbearer for the handover,in an exchange known as the ʻkissʼ.Each torchbearer left the bus to ahuge cheer from the remainingpassengers, but someone realisedthat as the last man I would not geta cheer – so they decided to giveme my cheer there and then!As I approached my moment ofglory I could see the crowdswaiting. The reception was amazing. I now knowwhat it is like to be a celebrity. I waited ten minutesfor the last torchbearer to catch up. Everybody wanted a photograph with me and theTorch. The people of Hartlepool were amazing andmade me feel so special.

9

c Torchbearer by Matthew Carnelley

The last torchbearer arrived and we completedthe ʼkissʼ. I was now carrying the Olympic Flame. Iwanted the next few minutes to last forever. Istarted my run, trying to look like I was going fastwithout actually going anywhere. I was greetedwith cheers and waves. The feeling of pride insideme was immense.I completed my run with my best ʻLightning Boltʼpose before completing the ʻkissʼ and handing

over the flame to the next bearer. I got back on the bus with the other36 members of my team.Back at Hartlepool Rugby Club amakeshift awards ceremony wasset up in the car park. One by onewe went forward to receive ourOlympic Torches, cheered on by our

friends and family. The experience weʼd all justhad will stay with us for the rest of our lives.Later we returned home to Darlington to greet thetorchbearers and join in the celebrations where anestimated 15,000 people on North Road inDarlington cheered the Torch as it passed.

Sunday 17thJune - ‘Thebest day of

my life.’


Torchbearing news

10

Shining bright!Simeon Wakely, by SueWakely, Simeon’s motherSimeon was nominated to carry the OlympicTorch last year by his swimming instructor,Pamela Galloway. When they first metSimeon was fearful of the water and verytimid. Pamela was inspired to beginswimming classes for disabled children living in Bath.

This was a real challenge for both studentand teacher as Simeon sought to overcomethe physical constraints of his disability andbecome a competent swimmer. Soon Pamelahad enabled Simeon to become so confidentthat he was retrieving bricks from the bottomof the pool.

In addition to his swimming achievementsSimeon has raised over £3000 for streetchildren in Mozambique and The Philippines.This was entirely his own initiative anddemonstrates his amazing character. On22nd May Simeon carried the Olympic Torchin Bitton, near Bristol, passing the Avon ValleySteam Railway en route … the train evenhooted as he passed! It was a greatexperience and one which Simeoncompletely deserved.ʼ

Ian PowellIan Powell has always lived anaction packed life, the 26-year-old from Chester has never letspina bifida stop him living life tothe full. During his life he hasbeen given a fifty-fifty chance ofdying and been on a life support machine inintensive care on two occasions.

But Ian still found the time to coach a juniorwheelchair basketball team, work as aclassroom assistant and has raised more than£1,500 for disability centre Dial House.

Ian was nominated to carry the Olympic torchby his mum who said, ʻHis strength ofcharacter is admirable, uplifting and inspiring.He sets an example to us all in respect ofgetting on with it.ʼ

Ian adds, ʻMy Mum and Dad alwaysencouraged me to do whatever I wanted, Iʼmpretty much the same as everyone – I just likeliving my life.ʼ Ian carried the Olympic torchthrough Saltney, near Chester, on Tuesday29th May, he said: ʻIt is a great honour to getpicked and is a great privilege. It is massiveand I am very grateful.ʼ

At just 13 years old, Chloe was chosen tocarry the Olympic Torch in Sutton-on-Seaon 27th June. The pupil from JohnWhitgift Academy was delighted to havebeen chosen after her tutor group Apollo 8nominated her for the honour.Chloe, who has spina bifida andhydrocephalus, loves to be active, ‘I amreally into sport and I play a lot of table

tennis. I go training twice a week at OldClee Sports Hall and I love it.’

Chloe is ambitious and lives life to the full,‘I don’t let my condition get me downbecause I was born this way and I am whoI am. I want to compete in the 2016Olympics so carrying the Torch is a reallybig privilege for me.’

Olympic Torchbearers 2012

Chloe Osbourne


Louise Hunt - Paralymplan

11

Why I chose to write about theParalympicsI have friends who are in wheelchairsand my little sister has spina bifida aswell, which is why I have chosen theParalympics. Athletes like Tanni Grey-Thompson show it doesnʼt matter ifyouʼre different, you can still do thethings you want to do if you try hard.

Shine member,Abbey Rayer,pictured herewith hersiblings

How long have you been playing wheelchairtennis, and how did you get into the sport?

I began playing tennis with my family at the age of5 and have enjoyed it ever since. We moved to ahouse where our neighbours had a tennis court intheir back garden, then a few years later four werebuilt opposite my house, it was like I was destinedto play! Then I went to the Stoke Mandeville juniorgames, and realised I could compete and pursuethe sport further.

What is your training schedule like in atypical week?

I train 6 days a week for anything between 3-5hours a day. A combination of on court with my

coach/hitting partner/ strength and conditioncoach, work in the gym, swimming and handcycling. Thatʼs why I love tennis so much, thetraining and competition is always so diverse.

What has been the greatestchallenge you have had toovercome as a sportswoman,and who has supported youthrough this?

I have had many challenges in mylife, both physical and emotional,but I think most people do at somepoint. I just see these events ascharacter building and have helpedshape who I am today. My familyand friends are truly incrediblepeople and I have them to thank for supportingme in all aspects of my sporting and personal life.

Who are your sporting heroes and why?

I wouldnʼt say I have any particular sportingheroes. But many other athletes have motivatedme, especially Paralympic and disabled athletesas they usually have an interesting and inspiringstory to tell about how they have got to where theyare now. My true inspirations are myGrandparents. They have faced many challengesin life yet been very successful in all they havedone, they have always encouraged me to followmy heart and do the best at I can at everything I do.

What are your hopes for the London 2012Paralympics?

To play the best tennis I have ever played! If I dothat, I will be very happy!

Louise Hunt:Paralympian

My homework: to write about an Olympic athlete


We are delighted tolaunch four new Go Folic!mini films to add to ourgrowing bank ofpreconceptioninformation. The films have beendeveloped to support thenew Go Folic! informationleaflet, both of theseprojects have been kindlysponsored by LanesHealth, and will be madeavailable to bothhealthcare professionals and the general public. Featuring four different families, each film looks at the Go Folic! message from a slightly different angle. The first film featuring Sam and her daughter Beth promotes the simple folic acid message (i.e. taking 400mcg prior to conception and for thefirst 12 weeks of pregnancy). The second film with Eilish and her son Michael,focuses on the importance of timing (i.e. the needto start taking folic acid, ideally for 3 months, priorto conception). The third film with the Stratton family and their sonHarry, raises awareness of women at higher riskof having an NTD affected pregnancy. The final

News

12

Folic films set to fly

film featuring Haleema, Saj and their son Toheedemphasises the need for the message to beclearly communicated (Haleema also gives the Go Folic! message in Urdu). A huge thank you to the all of the families involvedthat shared their personal stories to help support Go Folic! The videos will be available on YouTube, throughthe Shine and Go Folic! websites, Facebook andTwitter, as well as via links from other pregnancyrelated websites.Please help us to spread the word and take anyopportunity you can to share these touching filmswith your friends on Facebook. And, donʼt forget… the Go Folic! leaflets and postcards areavailable to both download and order in hard copy.We would like to thank Lanes Health andVitabiotics for their on-going support of the GoFolic! campaign.Look out for news of our exciting new partnershipwith the Family Planning Association in the next issue! Visit: www.gofolic.co.uk


13

Fit for the futureWith the Olympics and Paralympics upon us, itʼs agreat chance to take stock of our lifestyles. Thesporty people amongst us are being inspired totake up new activities; for the less sporty (most ofus, letʼs face it!), itʼs an opportunity to look at ourgeneral level of activity, what we eat, and how wekeep our bodies fit to last … well, a lifetime.Regular exercise can be great for our heart health,circulation, and for feeling better in ourselves.Outdoor exercise is a chance to get a bit (not toomuch though) sun on our skin, boosting ourvitamin D levels, which is crucial for bone health,and helping prevent depression. Exercise doesnʼt have to be a complex, expensiveprocess; if you like the gym and itʼs easy to get toand use, great. If not, find something simple youcan do most days – a daily round of the park oryour neighbourhood, or an exercise DVD at home(there are some good ʻseated ʻones for sale online for people with mobility or balance problems)are better than a fortnightly gym session! Scientists are showing that inactivity quicklychanges the way the body handles food energy,and that avoiding inactivity is as important asgetting traditional exercise. So try to move aroundfor a few minutes every hour. For wheelchairusers, exercising your legs, if you have anymovement, can improve the circulation and helpkeep the muscles active, which in turn can helpwith weight management.Weight control can often be a problem for peoplewith spina bifida, and can start from childhood.Parents often overestimate the amount of calorieschildren need to grow, and children with lessmuscle, and who are less active, will need fewercalories than active, mobile children.They still need the same nutrients, like protein,vitamins etc, but ʻemptyʼ calories in sugar

need to be avoided. We donʼt need sugar, andsome scientists are sure it is as bad as fat for ourlong-term health. Sugar in sweets, cakes and popis obvious, but fruit juices can have almost asmuch sugar as cola. Parents can really help theirchildren by providing a diet full of goodness, thatleaves out sugar & fatty foods like sausage rollswhere possible. Never use food as a treat, have trips to the park,or an extra story together instead. Overweightchildren with poor eating habits tend to beoverweight adults with health problems later in life; for people with spina bifida this increases their risk of pressure sores, can reduce mobilityand independence in transferring, and can make bladder and bowel management much more challenging. Involve the whole family inhealthier eating, rather than singling out one childfor a ʻdietʼ.Adults with lumbar spina bifida may need as fewas half the recommended daily calories assomeone of the same build and level of activitywithout spina bifida. Getting more exercise mighthelp, but you are unlikely to be able to do enoughevery day to burn off the extra, which may be asmuch as 1000 calories. This equates to an extra 3hours EVERY DAY in the gym! It is often easier tonot eat it in the first place!Sometimes people with hydrocephalus havedifficulty with memory, and underestimate howmuch they eat, because they forget. Taking aphoto on your phone of everything you eat in aday or a week can help you recognise whatʼsgoing on, maybe ask someone to remind you todo this if youʼre likely to forget.So, have a great Summer, and a fab Olympics, Iʼm off to the gym!

Shine Health Advice

by Shine Health Development Manager Gill Yaz


Gobi’s gossip

14

HelloeveryoneSince the last edition of Together, I washoping weʼd have taken in thefreshness of Spring and then findourselves bathing in glorious Summersunshine. Wrong! It appears the onlything weʼve taken on board is a lot ofrain! The only thing evident in the wordSunshine is Shine!

However, regardless of the weather,spirits are high and radiant at ShineHead Office. Needless to say, weʼvebeen as busy as always with numerousprojects underway, as well as plans forfuture events in the pipeline.

Once again, thereʼs plenty of gossip toget through with a real buzz of activitieswithin the Shine community.

Iʼve been busy creating links for Shinein a number of areas ranging from pubsthrough to schools and universities.With the initial contact and partnershipsmade, things are looking pretty good!

Boccia and Picnics!Regarding events, Iʼve had the pleasure of getting along to the Shine Boccia Event in North Somerset, and also the Shine Picnic inWest London.The Boccia event was planned to encouragemembers to come along to the recently formedNorth Somerset Shine Support Group. Supportand Development Worker for the region, AngieCoster, and I were delighted with the numbers that attended. Around 9 members (along with their family, friends and carers) turned up to a very successfulevent. Service users of all ages and ability tookpart in the Boccia and fun was had by all. Thanksto Alliance Homes, who helped to support theevent, we were all provided with some muchwelcome refreshments. It really was a great event,and I hope it will be the first of many gatherings inthe area.

SUSSTalking of schools anduniversities, the ShineUniversities Student Support(SUSS) is well under wayand with a number ofmembers already signed upto the free SUSSMembership, as well as theFacebook page gatheringnew members all the time. Iʼm optimistic that weʼllhave a great foundation for student support whichwill not only support students currently in HigherEducation, but also those wanting to progressfurther in their studies. So, if youʼre thinking abouttaking that next step in education, if youʼre alreadyin Higher Education, or if youʼve been there anddone that, come and SUSS it out!

Shine Members Event 2013One of the other major projects I’ve beengetting my teeth into is the planning anddevelopment of a Shine Members eventplanned for early summer 2013. It’s certainlya very exciting project for me to be involvedin, and I’m keen to make it a success so thatall you adult members out there will have athoroughly enjoyable day. Watch this spacefor updates!


15

I then headed off to the Shine Picnic in Perivale,London. Although the weather once againthreatened to spoil the occasion, we were blessedwith some glorious sunshine. Numbers wereslightly disappointing for the event, however, thosethat were there had a chilled out and pleasanttime, with Benny Bear making a guestappearance much to the delight of the youngsters… and the adults too!

London 2012Some of you will be gearing up for the Olympics and Paralympics which is promising tobe very exciting. From what seemed an eternityaway, we are just a matter of days away from one of the biggest events the country has everheld. Admittedly I wonʼt be part of the main event itself, but Iʼve had the honour of being part of the Olympic Relay which was a once in a lifetime experience.

My stint in Stevenage Old Town was betweenDrapers Way and Letchmore Road and to have somuch support around me was a fabulous feeling.

The Torch will be mine to keep and itʼll forever be areminder of a momentous occasion. But it will havemade a number of school visits before I get to restit on my mantelpiece. There is still the temptation torelight it and keep it alight. It might even save me afew pennies with my heating bill given the weatherweʼve been having!

Great Eastern RunOver the coming months, youʼll be seeing MediaDevelopment Officer, Darren “The Power” Fowerand I start our training regime as we get set for the Great Eastern Fun Run this October. Havingnever taken part in something like this, Iʼll be acomplete novice at this, compared my experiencedrunning companion!

No doubt thereʼll be blood, sweat (and tears when nobodyʼs about!) with the training weʼll bedoing. But donʼt worry; Iʼll be on hand to dryDazpotʼs eyes!!!

I didnʼt think Iʼd get to the end of all the gossip butIʼve somehow managed to squeeze all the events ofthe last few months into a couple of pages. Now that was a challenge! I hope you all have anenjoyable summer and that we all do experiencesome more sunshine along the way!

Make it 5During May and June, it was challenge timewithin Shine! Staff formed teams and took partin the Make it 5 challenge: The challenge beingto turn £100 into £500.

I was part of the super-dynamic andunbelievably good looking (well most of us –Sorry Daz!) Action 5 team comprising JackieBland, Darren Fower, Tony Nero and Tom Scott.We had a number of methods for reaching ourtarget ranging from Ebay auctions, a ‘Shine onSaturdayʼ event in Peterborough, and also araffle for which had some top notch prizes. All inall, we managed to raise just over £1000 whichexceeded our target considerably, so well doneto the Action 5 crew! That however wasnʼt to be

the highest amount raised due to a fabulouseffort from the team in Wales, who successfullyraised around £1700.

The overall amount raised by all Make it 5 teamswas £5200 – a truly great effort by everyone.

Until next time, good-bye!

A bit of Boccia!


Fundraising news

16

Charlie MillerFor some people one challenge isn’tenough and they decide to take on a wholehost of challenges over a year or evenlonger. One of those incredible people isCharlie Miller who is fundraising in memoryof her son George, who was born sleepingin April 2007. Along with family and friends,who have generously donated their time,effort and money to support her, she hasalready taken on skydiving and walked theYorkshire 3 Peaks. With more to come overthe rest of the year we are very proud ofCharlie’s efforts – Shine!

Dancing around the Maypole!The owners of the Maypole pub, Cambridgeinvited customers old and new to help toast its30th birthday last February, whilst at the sametime raising valuable funds for Shine.

The event celebrated 30 years since husband-and-wife team Mario and Christine Castiglionetook over the Portugal Place pub.

To mark the occasion the Maypole is hosted aBeer Festival featuring over 40 real ales.Everybody very generously got involved andraised a tremendous £1750.

100 ClubAfter a successful start in Wales we are nowrolling out the 100 Club in England and NorthernIreland too. By donating £4 a month via standingorder you will be entered into a draw for one offour cash prizes. Each month half of the money comes to Shinewhilst the other half is shared between the prizewinners. At less than £1 per week, and with muchbetter odds than doing the lottery, why not join inand help Shine to raise money at the same time. Places are limited to 100 club members, so donʼtmiss out, contact the Shine Fundraising Teamtoday! [email protected]

Team Shine TriathlonThree members of Shine staff are taking on adifferent challenge this year. To show that theyare not adverse to getting involved withfundraising themselves, they are going to bejoining over 20 other Shine supporters and11,000 other competitors in the LondonTriathlon in an attempt to raise £1,500 forShine.

Andrew, Kathy & Robin will be swimming,cycling and running through London on the23rd September – Go Team Shine!

Amazing fundraisers Shine!


17

Tom’s Trek – May Day Bank Holiday8-year-old Tom completed an amazing 30-miletrek in his home county of Cornwall, raising abrilliant total of £1,140.10. Tom wanted to raisemoney to help people with hydrocephalus, like histwin sister, so his Mum and Dad set him thechallenge of walking the coastal path fromNewquay to Wadebridge (accompanied by Dad – of course!).

Thank you Tom for such hard work, you should bevery proud!

Shine Charity AuctionHuge thanks to the Smith Family from Accrington,who have raised £2,926 with their Charity Auctionat Accrington Stanley Football Club.

Since 2009 Shaun and Dawn Smith and theirchildren have raised over £10,000 for Shine, thisis an incredible amount and we are really gratefulfor the amazing effort the whole family put intofundraising for Shine. Thank you!

AMPSShine is grateful to the Association of Manufacturers of PowerGenerating System (AMPS) for theirsupport this year. AMPS have raisedover £2500 since April from variousevents and hope to do even more for us.If you or anyone you know works for acompany that supports charities, please get intouch so that we can ask them to fundraise forShine.

Run the Cardiff HalfMarathon for ShineFeaturing a predominantly flat course which isperfect for people taking on their first halfmarathon, or anyone looking for a PB, this is oneof the biggest running events in the UK.

There will be Shine supporters there to cheer youon and to meet you at the finish as you join 15000other runners in this great event. We would loveyou to be part of a large Shine team runningthrough the streets of Cardiff this October.

To register, simply go online towww.cardiffhalfmarathon.co.uk and bookyour place. When you have confirmed your entry,or if you have done so already, then let us knowand we will send you a running pack includingyour FREE Shine running vest.

The Sargent FamilyJason, Lee and Rachel Sargent have had anepic summer of fundraising for Shine. Afterlosing their sister Nicola, who had spina bifidaand hydrocephalus, in 1974 at 4 months old,Jason and Lee wanted to combine fundraisingin her memory with celebrating India, Lee andRachelʼs beautiful little girl who has also beenborn with both disabilities.

Lee, Jason and their friend Tim raised awhopping £1,820 by bravely participating inthe Brighton Naked Bike Ride, wearing nothingbut big yellow Shine balls painted on theirchests!

Not to be outdone by her husband andbrother-in-law, Rachel is also training hard forher place in the Great North Run inSeptember. With the family already havingraised over £2,000 for Shine, Rachel is wellon the way to smashing her £500 sponsorshiptarget. Good Luck with the race Rachel!


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18


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ask for help to go to the toilet, I can just goand not interrupt our evening. When weʼre outwith friends, it is now much easier – it used tobe very awkward with a regular leg bag. Thisway I donʼt have to ask Julie to help if we areacross the room from each other. The Syphonbag breaks the barriers for me,” Nick says andadds: “And then itʼs also great when I want towear shorts too.”

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19


Focus on Shine Cymru

20

Left to Right - top row: Barbara Middleton,Val Conway, Tony Middleton, RuthPritchard, Sally King-SheardIn front: Di Sailsbury

CongratulationsThe North Wales Friends of Shine Cymru(formerly North Wales ASBAH) have won aʻHighly Commendedʼ Award in the Volunteer of the Year Awards for Wales. The group waspraised for its dedication in promoting awarenessof spina bifida and hydrocephalus. At the sameevent Shine Cymru member Diane Salisburyreceived a certificate for 15 years volunteeringwith Carers UK in Llandudno, North WalesFriends of Shine Cymru aims to be a supportnetwork for people affected by spina bifida andhydrocephalus while continuing to fundraise tosupport the work of Shine.

More information from: Sally King-Sheard T: 01745 889457 orE: [email protected]

University RAGSWe owe a huge thank you to Bangor, Swanseaand Cardiff University students who have raisedvaluable funds for Shine Cymru this year.

If anyone knows of any colleges or universities inWales who might be willing to support ShineCymru, then please let us know!

For any fundraising ideas please contact Andrew Ellis on T: 01733 421307 E: [email protected]

Benny Bear impressesChildcare StudentsPembrokeshire College students took a realshine to Benny Bear when they took part ina Community Project as part of their WelshBaccalaureate qualification.

Shine Cymru’s Mel Hayes helped thetrainee childcare professionals to developtheir knowledge of spina bifida andhydrocephalus and learn more about thework of Shine.

The session also helped some of the youngwomen personally, as few had heard aboutfolic acid and its role in preventing spinabifida, and yet at least two had incidencesof spina bifida in their families.

The students also helped Benny Bear makeparty bags for young members to be givenaway next Shine Cymru Family Fun Day atFolly Farm.


North Wales SocialsA Shine Cymru lunch in Rhuddlan was attendedby 12 members who enjoyed getting to know eachother better and getting more involved in the workof Shine – as a result of the event three membershave signed up as Shine Cymru volunteers. Thisevent was one of a series of social lunches inNorth Wales being co-ordinated by ShineCymruʼs Bryn Roberts and Sally King-Sheard

Family Fun Get-togethers Since the lastedition ofTogether, some of our youngermembers andtheir families haverecently enjoyedfun and games attwo superb touristattractions in South and West Wales. The familiesreally enjoyed meeting together and seeing the children enjoy themselves.

Thanks to St Faganʼs in Cardiff, and Folly Farm,near Tenby. Shine Cymru hopes to make familyfun get together an annual event, so watch thisspace for further information.

21

Susie Sunshine WalkThe annual Susie Sunshine Walk has takenplace in memory of Val Conway’s daughterSusie. Despite the worst weather in thewalk’s 10 year history many Llandudnopeople turned out to celebrate Susie’smemory.

The walk went off without a hitch andchildren and grown-ups turned out incustomary fancy dress to celebrate theoccasion. Olympic Torchbearer Ian Turner, along-time supporter of the walk, broughtalong his torch, provided music andcommentary and also helped with fundraising.

Commenting afterwards, and thanking allinvolved, Val said: ‘It isn’t just about themoney raised, but also being out in thecommunity, raising awareness about thegood work that Shine does.’ Val is nowlooking forward to celebrating everyone’sachievements by holding the annual SusieSunshine Awards Evening. Contact SallyKing-Sheard for further information about theawards on T: 01745 889457 orE: [email protected]


Q: What is incapacity reform?A: A number of incapacity for work benefits arebeing abolished, restricted or replaced. If you arecurrently claiming one of the benefits listed below,you will soon be reassessed under the rules foranother benefit called Employment & SupportAllowance (ESA). The benefits being replaced are:• Incapacity Benefit, • Severe Disablement Allowance,• Income Support (paid on the grounds of

incapacity)

Q: When will this happen?A: This is happening betweenOctober 2010 and April 2014.This reassessment process willnormally be triggered by yourcurrent incapacity benefit renewaldate. The benefits office handlingyour claim will contact you aboutthis in advance, in writing, and by phone.

Q: Will I be exempt?A: You will be exempt from these reforms if:You already claim ESA, or you reach state pensionage before the 6th April 2014. However, the statepension age rules have recently changed, so youshould double-check to see when you qualify.

Q: What happens if I pass the new test?A: Those who pass the test will be migrated ontoESA and will be placed into one of two groups: theWork-Related Activity Group (where you will haveto undertake some preparation for work), or theSupport Group (where you wonʼt have to preparefor work).

Q: What happens if I fail the new test?A: If you fail the test, you will have a few options:You can appeal this decision (but there are strictdeadlines); You may be able to claim IncomeSupport on other grounds, for example, as a carerinstead of a claim based on incapacity for work;

Benefits explained

22

Reform of Incapacityfor work benefits

You may consider claiming Jobseekerʼs Allowance, You may be able to claim PensionCredit, or You will have to move off of benefitaltogether.

Q: What are my chances of passing the newtest?A: Although the figures for new ESA claims are notas positive, in the most recent report published bythe government in March 2012, they found that ofthose being reassessed from incapacity benefits

into ESA 63% passed and 37%had failed. This means that theodds are with you!

Q: What do I do for now?A: For further reading, you canget a wealth of officialinformation by going towww.direct.gov.uk, andsearching for relevantkeywords (i.e. ʻcalculatingpension ageʼ); the search paneis on the top right-hand side ofthe webpage.

Importantly, we know from experience thatclaimants will often have a much greater chance ofsuccess if they seek advice and support. Wetherefore advise all of those who may be affectedto seek help from your local Support &Development Worker and/or from your local advice agency.

Finally, you will also greatly benefit from attendingone of our Welfare Reform workshops which weare running across Wales and in some other partsof the country over the coming year. At theseworkshops, we will be able to offer you some moredetail on this and other subjects as well ashopefully answer some of your important questionsin person. See you there!

Those beingreassessed

from incapacitybenefits into

ESA 63%passed and 37%

had failed.

Eri Mountbatten,Welfare Rights Adviser, Shine Cymru.


23

Northern IrelandOn the 3rd June the Olympic Torchvisited Cushendall, the hometown of ourNI Director Cathy McKillop. The Torchwas carried by Daniel Black, Daniel hasspina bifida and hydrocephalus andlives in Ballycastle. This is what Danielhad to say about the experience -ʻI will always remember it for the rest ofmy life. It has been a crazy month ortwo after it with all the press events andgoing to different schools to show thetorch. It was such a great experiencethat it is hard to put into words. I got tokeep my torch so I can show it topeople. Being a part of the OlympicTorch route gave me a chance tohighlight my achievements in life.ʼ

The Shine team were delighted thatDaniel was chosen to carry the Torch.Daniel brought his Torch to a recentevent Olympic themed sports night inColeraine and lots of our members got the opportunity to hold it.

Lydia Bell enjoyed carrying the Torchthrough Bellarena and is pictured hereleading the torch through the village.

Northern Ireland


It is with deep regret that I haveto tell Together readers that myfather, James C Rippey MBE,passed away in April after ashort illness.Following my birth in 1968, myDad joined the Belfast Branch ofASBAH (now Shine) andfounded the local branch in Mid Ulster. Dad became the first Chairmanof the N.I. Association in 1970and was also Hon. Secretaryuntil 2005. Dad always foundtime and energy for the manyactivities of the Associationwhose achievements include

the provision of a childrenʼsclinic, an adult clinic, and regularliaison with field workersappointed by National ASBAH(Shine) to improve resources inNorthern Ireland.

A friend of my Dadʼs said afterhis death, ʻIt is quite impossibleto adequately recognise the fullextent of your Dadʼscontribution – all thosemeetings attended, minuteswritten, letters written, andtelephone calls handled. Thoseactivities often gounrecognised, but they willhave consumed hours and

hours of your Dadʼs life. He did all that because heunderstood the value of service, the value of givingand, as a result, the lives ofmany people were enrichedand enhanced – Jimmy madethe world a better place.ʼMy Dad received an MBE forservices to charity in June2003.He will be sadly missed by hisfriends in NIASBAH andparticularly by his family, hiswife of 58 years, 3 children, 4 grandchildren and 1 great-grandchild.

24

Tribute

Siobhan Corr – Atribute to my father


25

Events


The SAMC met for their second meeting of 2012at Shine Head Office on Saturday 21St April.Welcoming Shine CEO, Jackie Bland, HealthDevelopment Officer, Robin Barnatt, PolicyAdviser, Laura Reed, Development Manager HQServices & Eastern Region, David lsom, andMembership Development Officer, GobiRanganathan.

DevelopmentsLisa Cain attended the Red Hill ChildrenʼsHydrocephalus Day in April, Lisa also attend theEastbourne - Early Support for Professionals andFamilies Hydrocephalus in May. Mike Berginattended the first get together of members fromGrimsby and surrounding areas in Grimsby inMay, also in attendance were Shineʼs PrincipalHealth Adviser Rosemary Batchelor, and SupportDevelopment Worker, Geraldine Whittle. l wouldlike to encourage members to try and attendevents like this if you can, they are designed foryou to enjoy and meet other members.

Health SurveyRobin Barnatt discussed the results of the healthsurvey and the findings of this research. JackieBland said Shine needed to highlight issuesspecific to SB/H and that there are areas of health

26

of people with SB/H which need furtherinvestigation. There were several contributionsfrom the SAMC on this and it was agreed thatShine now needs now to put a case together topresent to a Minster regarding the shortcomings ofcare. Many thanks to everyone who took part inthe survey, your voice really has been heard.

Shine Action GroupThe Shine Action Group will meet for the secondtime on Friday 17th August, the group which islead by Membership Development Officer, GobiRanganathan, includes SAMC members; LizPotts, Mike Bergin, Lisa Cain, Lisa Law, BlossomCoreira, and Stuart Bowman

SAMC Meeting April 2012

Get in TouchAgain, I would like to encourage all ourmembers to get in touch if you think thatthe SAMC can be of any help to you. Weare here for you the members, please justemail me via the contact below. Until thenext time kind regards to everyone.

Michael Bergin Communications Officer, SAMC. E: [email protected]

Shine Adult Members Meeting (SAMC)


27

Events

Wednesday 2nd: 1-3pmYork Drop in - for Adults and Parents. Contact: Denise/Sylvie 0113 255 6767

Friday 3rd 10am–12pm (West Yorkshire)North West Yorkshire Drop In Session Contact: Bernie Baldwin 07703 182480

Sunday 12th (London) London Social Group Itʼs our summer holidaya day in Brighton. Contact: Hilary Franklin0208 441 9967

Tuesday 14th 11am–3pm (Birmingham)Family Day Nature Centre Birmingham Contact: Geraldine Long 01789 763090

Tuesday 14th 1.30–3.30 (Liverpool)Your Benefits are Changing for 16 -64 yearolds on Benefits Contact: Angela Lansley0151 733 8392

Wednesday 15th 1.30–3.30 (Llandudno)Your Benefits are Changing for 16 -64 yearolds on Benefits. Contact: Byrn Roberts01248 724 944

Wednesday 22nd 11am–3pm (Somerset)In Full Working Order for adults with spinabifida Taunton. Contact: Angie Coster 01308426372

Thursday 30th 11am–3pmFamily Day Sandwell Valley Park Contact: Geraldine Long 01789 763090

Thursdays 1-3pm (Wirral)Chairobics every Thursday. St StephenChurch Hall Wirral. Contact: Elizabeth Miers01490 450360

2nd Wednesday 1 – 3 pm (York)Drop in - for Adults and Parents. Contact: Denise/Sylvie 0113 255 6767

Monday 10th 1-3 pm (Dunstable)Dunstable Support Group. Contact: JohnRichards 01908 610611

Saturday 29th (Birmingham)Legal event for parents. Joint working withCAF,Mencap and Scope. Contact: GeraldineLong 01789 763090

Thursday 20th 10.30am – 4pm(Southampton)Bladder & Bowel Day Southampton Contact: Denise Taylor 0208 441 9967

Thursdays 1 - 3pm (Wirral)Chairobics every St Stephen Church HallWirral. Contact: Elizabeth Miers 01490450360

Friday 7th 10 am – 12pm (West Yorkshire)North West Yorkshire Drop In Session Contact: Bernie Baldwin 07703 182480

August

September


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together issue 6

News & Politics

shine awareness week

issuewear yellowand

danny millsset

day danny

months page

gobis membership news

theamore useful wheelmate

news p22benefits