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Our first issue out for summer 2014. We hope you like the new layout! There were a few errors/ typos but we're working on it and developing it so any feedback please get in touch! [email protected]
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Issue 1 Summer 2014 7 July 2014
Note from the Editors !Welcome to the new and improved Grapevine! Jess Mansel and Tamla Willie have joined James Thomas to make up the new team. Before re-launching The Grapevine we looked back at previous issues and carried out a survey asking readers what they wanted from the branch newsletter. We’re including more interviews with local people and coverage on M.S events. Our new section “Group in Focus” interviews members of the different MS groups available in Cardiff . #!In the next issue we’ll introduce real life interviews and “The Bluebadger” a section which reviews places in Cardiff based on their accessibility (this was a reader’s suggestion!) There’ll be a competition and “Challenge Tamla”. You also asked for an improved look and better appearance which we’ve made a start on and will develop over the next few issues.We hope The Grapevine will include as many voices and contributors as possible, keeping branch members informed and connected as a community. #
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!Contents
Fundraising:!Morgan!Skydives.!!!!!!
pg.!334!
Branch.Collec3on.dates!pg.4!
Event:.MS!Life!2014!pg.!5!36!
Riverside.Advice.Project!pg.6!
MS.Cymru:!Iestyn!Evans!pg.!738!
Group.in.Focus:!Monday!Club!pg.9!
Column:!Meals!on!Wheels!pg.!11!
Useful.contacts/dates!pg.!12!
Contact us
Tel/Text:.07864705074!
Follow.us.on.Facebook.and.TwiIer:.
www.facebook.com/cardiffgrapevine.
tweet:.@grapevine_MS.
!!*The grapevine would like to say a special thank you to Mel Williams for her time and advice.
If you’d like to be involved in producing The Grapevine, have an idea for an article or you’re willing to be interviewed get in touch: [email protected]
Issue 1 Summer 2014 7 July 2014
“I didn’t want a party for my 16th birthday so I came up with the maniac idea of jumping out of a plane for the MS Society” .!Morgan Hughes, whose father Steve has Relapsing Remitting MS, will be spending her 16th birthday jumping out of a plane to raise money for the MS Society. Inspired by her Dad who has previously skydived for MS, she has a target of raising £1000 by July 12th for a charity that is close to their hearts.#!The family first got involved with the MS Society a few years after Steve was diagnosed and have requested funds raised go to the Cardiff branch in order to continue its work, in particular providing members with transport. “The minibus really helps those who can’t get around on their own. Bringing people together is important when you’re living with MS, it helps to meet friends in the same situation.” #!The family arranged the skydive, setting up a just giving page themselves and have had some generous donations. “One local businessman- Tom Gent from Cass’ Scaffolding- has donated £250! None of the donations will pay for the skydive itself, we've paid for
it as Morgan's birthday present so all money raised will go towards helping people affected by the condition.” #!Steve and his wife Kirsten have been open with their two children about Steve’s condition. “Our son Taylor was born 23 days after I was diagnosed so he’s always lived with me having MS. Morgan was 7 at the time and had known me as a well person who could run around and had more energy. All of a sudden it #
was like Dad can’t do so much and we decided I would stay at home with the kids and Kirsten would work full-time, so we had to explain these changes." #!When asked if there was enough information and support to help parents explain MS to children the couple gave a resounding no.Rather than using anything technical Steve keeps it to the bare minimum when explaining his symptoms and the children have a confident
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FUNDRAISING
Issue 1 Summer 2014 7 July 2014
understanding of the condition. # #The main challenge presented to the family has been living with the unpredictability of MS. “We can’t look to the future and guess what will happen or how things might progress. We also can’t plan ahead, we got invited to a wedding last year in Dubai and couldn’t RSVP until nearer the time- we can only plan at most a month in advance. This has impacted on us but we don’t feel MS has changed us. As a family we all have low days about different things, school or work or MS and we try to keep everything as normal as possible- we still argue with the kids about tidying their bedrooms and doing the dishwasher! There have been some positives too, M.S has allowed us to be very honest and open with the kids, even about other things like their grandfather passing away. We’re a very close family unit."
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Morgan’s skydive is taking place on Saturday 12th July. How to donate: !Visit: www.justgiving.com/Morgan-Faith-Hughes !Text donate: MFSD98 followed by the amount you wish to donate (ex. MSFD98 £5) to 70070.
Cardiff Branch Collection Dates.#A great way to get involved and support your branch is to help out on a collection day.
Shifts are usually in pairs, lasting 1-2 hours* and you can sit down throughout. (Editor’s note: Most of them are in supermarkets with air conditioning which is handy during these hot months!)
The collection days are vital in raising funds for us to continue offering local services and support.
Dates for your diary:
Friday 25th July - Tesco St Mellons, Thursday 21st August -Tesco, Pengam Extra, Thursday 28th August -Tesco Stirling Road, Barry. !*We normally collect in shifts of 2 hours from 9.00-11.00am, 11.00 - 1.00pm, 1.00 - 3.00pm, and 3.00 - 5.00pm. !Flag Day: Saturday 2nd August
Our ‘Flag Day’ in Cardiff City Centre and St David’s Centre is a great opportunity for us to raise donations and we need as many people to help out as possible! !If you can help with any of the collection dates please email Bill Lewis: [email protected]
Issue 1 Summer 2014 7 July 2014
Why did you come to MS life? Tam: I’ve never been before! and it sounded like the kind of thing where all the information about MS comes together in one place. We were quite lucky as we received a grant (from the MS Society) which helped towards travel and accommodation costs. How has the access been? Tam: The venue itself is good in terms of being accessible- everything on one level, lots of toilets. There’s a lot of space and public transport here was fine (we used the Tram) We had a it of a problem with the hotel we stayed at- The lift had broken down and we were on the first floor! But they were accommodating and moved us to the ground floor instead.
So the event runs over two days- Saturday and Sunday- and you were here yesterday. What was your highlight from the first day? Tam: My highlight was meeting the scientists who were talking about how M.S works, the research behind it and where research is moving to in the future. One exhibition included a knitted model that explained how the brain works and what happens to the Myelin in M.S . (Pictured) Jess: For me the highlight has been seeing people here that I know! When I came in 2012 I didn’t know anybody, I came on my own. It was a very different experience- quite daunting! The Cardiff and Vale branch did organise minibus transport for people who planned to attend- so if you couldn’t drive you could still get here. We got the train and used the Trams around Manchester… If you could change anything about MS Life, what would you do? Jess: I think the venue is huge! and if you’re not using a mobility scooter or a wheelchair it can be really hard and tiring walking back and forth from one end of the venue to the other visiting different workshops and talks. There are 5 workshops spread out though out the day with a half hour break in between them- I would have liked a longer break
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In April Jess and Tam travelled up to Manchester for MS Life 2014 for a two day event to find out the latest on workshops, research and services for people with MS. Here’s what they had to say….
EVENT: MS LIFE 2014
Issue 1 Summer 2014 7 July 2014
over lunch maybe, in the middle of the day. Also some of the workshops could be duplicated over different days so you don’t have to try and squeeze so much in, it would give you more choice. Tam: I think some of the workshops are too long. I hour is too long for me in terms of fatigue, half an hour would have been better. Jess: I also think the actual map you get to guide you around the venue to different workshops is confusing! What would you say to anyone thinking of coming to the next MS Life event? Jess: It’s a really good thing to come to- all the information you need is under one roof which is very helpful, especially when you’re newly diagnosed! Even if you’ve been diagnosed for a while you may still find a lot of information that you didn’t know about,there are new things emerging all the time and I’ve been surprised at how much information and support is available for people affected by MS. The event has definitely grown and diversified over the last two years in that respect. I think it’s also a good chance to have a chat with the MS Society and other organisations that exist to help people. Tam: I think it’s good to see how many people there are affected- to see there are people around like you. Jess: Yes- and also such a wide range of people- all affected differently. There’s no one size fits all for MS and when you come to an event like this you can really see that. !Describe MS Life in three words? Jess: Informative, diverse and….busy!
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Riverside Advice Project# Tel: 02920 341 577 "!Riverside Advice offers a dedicated service to people with MS living in Cardiff, the Vale and Rhondda Cynon Taf. As well as providing advice on benefit entitlements and debt, they provide help with completing forms and with appeals and tribunals.
The service offers dedicated advice surgeries for people with MS and their families with an advisor at Grangetown Library and Pontypridd Museum. For people who find it difficult to access these, they can provide home visits.
The service is currently funded by The MS Society Cymru and by Cardiff and the Vale and Rhondda Cynon Taf Branch. This funding is due to end soon and, while we are working with the project to find opportunities for new funding, if you have any concerns or queries about your financial situation or your benefits now is the time to take advantage of this project.
!Tel: 02920 341 577
Issue 1 Summer 2014 7 July 2014
! ! !
Iestyn Evans
Area Fundraising Manager
Tell us a bit more about your role?!! When!I!first!started!in!the!role!7!years!ago!I!organised!lots!of!small!events!which!are!good!for!geNng!to!know!people.!The!idea!was!to!build!a!network!of!people!who!would!hopefully!conPnue!to!support!us3!at!other!events!or!by!becoming!a!volunteer,joining!the!council!or!giving!regular!donaPons.!!Now!that!we’re!quite!established,!we!can!ask!those!supporters!to!organise!something!individually!and!that!way!we!have!more!events!and!more!donaPons!!We’re!in!the!posiPon!now,!in!Wales,!where!we’ve!got!a!network!that’s!large!enough!to!support!individuals!to!raise!money!directly!for!branches.!!! So!at!the!moment!a!priority!!for!me!is!to!support!individual!fundraisers!to!do!their!things.!On!example!of!this!is!Alison!James,!the!sister!of!the!late!Helen!Druham!(who!the!neurology!centre!in!Cardiff!is!named!a^er)!walked!one!hundred!and!eighty!six!miles!around!the!Welsh!coast!in!the!memory!of!her!sister!and!!raised!nearly!nine!thousand!
pounds.!I!helped!with!planning,!!IT,!press,!and!gave!advice!on!wriPng!le`ers!asking!for!donaPons!and!geNng!businesses!involved.!Another!person,!Aled!Evans!is!organising!a!concert.!He’s!already!raised!about!two!thousand!pounds.!Hopefully,!both!of!these!fundraisers!will!conPnue!to!fundraise!of!us!each!year.!!! In!terms!of!events,!we’ve!organised!“The!Wire”!for!seventy!five!people!which!raised!nine!thousand!in!MS!Week.!We’ve!had!a!Golf!Day!which!raised!three!and!a!half!thousand!and!we!also!hold!community!events,!which!usually!raise!between!five!and!fi^een!thousand.!There!have!also!been!cake!breaks!and!the!Cardiff!Half!Marathon!raised!£10,000!with!about!70!people!running!for!us.!!!!What’s.the.best.way.for.someone.interested.in.fundraising.to.get.involved?..!! Find!something!that!you!want!to!do,!that!you’re!going!to!be!passionate!about,!that’s!either!scary!or!is!a!challenge3some!sort!of!suffering!usually!helps!because!then!people!are!going!to!be!sympathePc!and!give!you!more!money!!The!first!step!is!to!plan!what!you’re!doing!and!how!you’re!going!to!raise!money!out!of!people3!will!you!going!ask!them!to!buy!something?!Is!it!a!Pcketed!event?!Are!you!going!to!go!for!just!sponsorship?!You!can!usually!!ask!friends!and!family!for!sponsorship!up!to!a!point!but!it!can!help!to!organise!events!that!are!going!to!appeal!to!people!and!they’ll!enjoy!or!like.!Also!think!about!things!you!can!tag!on!like!raffles.!!Cont…&! !!!
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Each issue will profile someone from MS Cymru to find out more about their role in the team and the work they are doing for people affected by M.S.
MS CYMRU
Issue 1 Summer 2014 7 July 2014
Get!friends!and!family!to!help!you!with!your!fundraising!because!the!more!people!that!you!can!involve,!the!more!you!can!raise!!Beyond!becoming!a!fundraiser!you!could!also!think!about!bringing!in!your!networks,!friends,!families,!colleagues,!to!support!us.!!! Most!fundraisers!know!someone!with!MS!so!it’s!important!people!with!MS!talk!about!their!condiPon,!why!it’s!important!to!raise!money,!not!just!for!research!for!the!future,!but!for!people!living!with!the!condiPon!now!3!who!need!informaPon,!advice!and!support.!The!more!that!message!gets!out,!the!more!sympathePc!supporters!are!going!to!get!involved.!If!someone!is!interested!in!geNng!involved!it’s!best!for!them!to!contact!me!or!to!check!the!website,!follow!us!on!Facebook!and!Twi`er.!Also!check!The!Grapevine.!!!What.quali3es.do.you.need.to.be.a.good.fundraiser?.!! Generally,!it!helps!if!people!are!very!social,!outgoing!and!can!arPculate!their!vision!nicely.!And!don’t!mind!asking!!A!lot!of!the!Pme!though!it’s!not!even!about!asking,!it’s!just!about!saying!what!you’re!doing!and!making!it!clear!that!you’re!doing!it!for!charity3!Most!people!will!interpret!that.!!The!power!of!social!media,!these!days,!is!that!you!can!constantly!bring!people!along!in!your!story!and!in!your!challenge!and!you!can!tell!them!what!you’re!doing,!every!step!of!the!way.!People!like!stories.!They!don’t!support!chariPes,!they!support!people!so!the!more!you!tell!your!story,!the!more!they’re!going!to!support!you.!At!fundraising!events!we!usually!need!volunteers!to!help!with!marshalling!or!networking!which!is!a!great!way!to!raise!awareness!by!talking!to!people!about!MS!and!the!MS!Society.!Some!!fundraisers!want!to!do!something!physically!challenging,!some!of!them!don’t!have!MS!but!are!friends!and!family!or!employees!or!colleagues!of!someone!with!M.S.!However,!a!Cake!Break!is!great!because!it’s!something!that!anyone!can!do,!anyPme,!regardless!of!their!ability!and!it!can!be!done!at!home!so!everyone!can!get!involved.!!! !
For!people!who!live!with!MS!combining!fundraising!with!Social!acPviPes!is!great3!geNng!together!to!have!a!drink!and!a!chat!whilst!doing!something!posiPve!together,!as!a!collecPve!is!one!a!way!to!!meet!other!people!with!MS.!!! We!want!to!know!what!people!think!about!services!in!Cardiff.!Once!we!idenPfy!the!need!for!these!services,!we!can!idenPfy!the!funding!to!make!those!services!happen.!So!fundraising!and!development!are!both!part!and!parcel!as!There’s!a!lot!of!opportunity!in!Cardiff!for!people!to!get!involved!in!fundraising,!to!do!their!own!fundraising!and!volunteering!and!help!improve/develop!services.!Because!the!more!money!we!raise,!the!more!we!can!offer.!!
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What’s.coming.up?..September:!Cardiff!10K!!Challenge!MS!3!Throughout!the!whole!of!September!anyone!can!choose!something!to!challenge!themselves.!!October:!Cardiff!Half!Marathon.!!For.more.information,.advice.or.to.
get..involved.with.fundraising:.
Contact!Iestyn:!Tel:!(029)!2167!8920!!Look!at!local!events:!www.mssociety.org.uk/near3me/naPonal3offices/wales/fundraising3events!!Follow!MS!Cymru!on!Facebook!and!Twi`er:!www.facebook.com/msscymru!Tweet: @mscymru
Issue 1 Summer 2014 7 July 2014
How long have you been coming to Monday Club? For about a year and a half.
How did you first hear about it? Through my M.S nurse. She also mentioned another group that meets on a Wednesday (For details of Wednesday club see "Group Listings")
How would you describe the evening? Informal, just having dinner with a group of like minded, similarly affected people.
!!
What would you say to someone who was thinking about coming but wan't sure? I would understand that completely. Having had MS for 27 years I spent most of those years not joining in with anything to do with M.S, it was bad enough that I had it without dwelling on it. But having had to give up my job I then started to join in with things and now find it a very warm experience, to be surrounded by other people who have M.S- not everyone is at the same stage of MS- but just other people who have M.S, that is incredibly heartening. And actually we don't really talk about MS: Because we all have M.S we don't need to talk about it!
Can you describe monday club in 3 words? Just eating dinner? Good dinner company.
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For details of the next Monday club join the "Cardiff Branch MS Society" page on Facebook.
Monday Club, as the name suggests, meets on a Monday evening once every 4-6 weeks for food and lively conversation. The group- which includes those who have M.S, their family and friends- has a very relaxed and welcoming atmosphere, with meetings taking place in a family friendly pub (Previous venues have included the Sand Martin and The Harvester where access and parking have been good.) We interviewed Peter,!49,!who!has!had!MS!since!age!22.!
GROUP IN FOCUS
Issue 1 Summer 2014 7 July 2014
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Issue 1 Summer 2014 7 July 2014
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Meals on Wheels: KFC Style chicken
Ingredients:. Half!TSP!of!salt!!! 1!TSP!of!all!purpose!seasoning!! ¾!of!TSP!pepper!! 120!g!of!flour!! 2!TSP!of!paprika!! Chicken!breast,!no!skin,!cut!into!strips.!! 100!g!of!bu`er!!! Method:. Preheat!oven!to!200°C,!400°F!! !Place!chicken!in!a!bowl!of!milk.Let!it!soak!for!about!20!or!30!min!(longer!is!fine)!! !Mix!all!the!dry!ingredients!in!a!bowl,!or!a!medium!freezer!bag!and!mix!well.!! !In!an!ovenproof!tray,!melt!the!bu`er!and!make!sure!that!it!is!evenly!covered.!!Shake!off!the!excess!milk!from!each!piece!of!chicken,!place!in!the!bowl.Make!sure!each!piece!is!covered!with!the!spice!mix.!!Place!each!piece!of!covered!chicken!into!the!bu`er!.Cook!first!15!min!then!turnover!and!cook!for!a!further!15.!!
!We are looking for people to
get involved with The Grapevine.
!We’d like to hear from as many Branch members as possible to make sure The Grapevine as an interesting and varied
community newsletter. !
If you would like to: !• Be interviewed for our real life section • Have an idea for a feature or story you’d like
us to share • Are fundraising for MS • Could review a local place • Would like to write an article • Would like to take photographs for us • Or would like to get involved with the design,
production and distribution of The Grapevine in another way. !Get in touch for a chat: !Email: [email protected] !Text/ Tel: 07864705074 !Facebook: www.facebook.com/cardiffgrapevine !
Issue 1 Summer 2014 7 July 2014
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Wednesday Group
Every Wednesday 2-4PM (during term time)
Cyncoed Methodist church, Westminster Crescent, Cyncoed, CF23 6SE
Monday Club Monday evening, Roughly every 5-6 weeks.
The SandMartin pub, Ffordd Fred Keenor, cardiff CF11 8ER !Info: Facebook search “Cardiff Branch MS Society”
Young MS Group Meets once a month. Various places in Cardiff. Info: www. facebook.com/youngmsgroup
Yogamobility Mondays and Thursdays 10.30 am- 12.30 pm.
Sbectrwm, The Old School. Bwlch Road, Fairwater, Cardiff, CF5 3EF.
Chairman Tony Wiggins [email protected] or 029 20308257 !
Secretary Mel Williams mel.williams@ntlworld,.com
Membership and Collections
Bill Williams [email protected]
BRANCH CONTACTS AND GROUP LISTINGS
The Grapevine is published by The Cardiff and District Branch of the Multiple Sclerosis Society, charity No. 207495. to bring you updates about MS and news in your MS community. All the
views expressed in the publication are individual and not necessarily the view of the charity or its supporters unless stated otherwise. Editors: Jessica Mansel, Tamla Willie, James Thomas.
Email: [email protected] or Tel: 07864705074#
