SMASupportUK

SMASupportUK Follow

We are an established charity that supports and empowers anyone affected by Spinal Muscular Atrophy.

http://www.smasupportuk.org.uk/

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Could you help us raise funds this Autumn by running a stall at your local Autumn or Christmas fair to sell some of our Christmas cards and merchandise? We can send you everything you need on a sale or return basis. By December most people have stocked up on cards, so September - November are the best times to run a stall. Please contact Caroline if you think you can help on 01789 290272 or email caroline.dolan@smasupportuk.org.uk

#helpus #merchandise #autumn🍁 #christmas2017 #saleorreturn #sell #stall #christmasfair #autumnfair #christmascards #cards #sma #smasupportuk #spinalmuscularatrophysupportuk
Though not in the UK, Roche has begun to enrol SMA patients in the FIREFISH Phase II trial of their splice-modifying drug, RG7916 (also known as RO7034067). Read more in this report from SMA Support UK's Scientific Research Correspondent, Dr James Sleigh: http://bit.ly/2v1rOaO

#roche #trial #clinialtrials #smaresearch #sma #spinalmuscularatrophy #scientificresearch #researchcorrespondent #smasupportuk #spinalmuscularatrophysupportuk
Best of luck to Clare Clarke as she takes on the Dundee Kiltwalk today! There’s still time to sign up to the Edinburgh Kiltwalk on 17th September. Visit http://bit.ly/2vHx0Vw for details.

#smasupportuk #spinalmuscularatrophysupportuk #sma #spinalmuscularatrophy #charity #fundraising #kiltwalk #raisingfunds #walkersofinstagram #walking #dundee #edinburgh #scotland
Sending best wishes and thanks to Amy and Craig Cameron and their family and friends who have been busy organising a bowls competition and fundraising event for today in aid of SMA Support UK. We will be keeping our fingers crossed for a nice dry day for you all!

#smasupportuk #spinalmuscularatrophysupportuk #sma #spinalmuscularatrophy #charity #fundraising #lawnbowls #thankyou #fundraiser #raisingfunds #helpfortoday
If you are living in the UK and are affected by SMA, you may be interested in the Sharing Experiences section of our website. This incorporates a number of different services, including SMA Voices (where people share their personal experiences) and 'Ask A Question' (where you can email any questions you may have; previous topics have included transport, school issues, holidays and adaptations). Click here to find out more: http://bit.ly/2fvvFuB

#sharingexperiences #smacommunity #personalexperiences #share #smavoices #askaquestion #supportservices #ourservices #topicfordiscussion #peersupport #sma #spinalmuscularatrophy #smasupportuk #spinalmuscularatrophysupportuk
Last week you may have seen us posting about UK #SMAAwarenessDay which will be on Saturday 30th September 2017. As part of that, we need your help to raise as much awareness of SMA as possible - one of the things you can do is sign up to our Thunderclap (a message that will go out on everyone's social media pages at the same time on the 30th). Once you've signed up, please share with family, friends, colleagues and your other social media contacts to encourage them to sign up too. We need at least 100 people to sign up for  the Thunderclap to work and, of course, the more people who sign up, the more awareness we will raise! (Please note that the joint SMA awareness page link in the Thunderclap message isn't live yet but will be soon!) To find out more about it and to sign up, click here: http://bit.ly/2vFJI6E

#SMAAwarenessDay #smaawareness #spinalmuscularatrophy #sma #smasupportuk #spinalmuscularatrophysupportuk #musculardystrophyuk #smatrust #treatsma #raisingawareness #awareness #rarecondition #geneticcondition #thunderclap #support #supportus #helpus #spreadtheword #signupnow
The Bournemouth Marathon Festival takes place on 7th and 8th October this year and includes a full marathon, half marathon, 10k, 5k, Junior 5k, Junior 2k, Junior 1.5k, and a kids' kilometre. If you would like to take on one of these awesome challenges, visit http://bit.ly/2uOfLym or contact Caroline on 01789 290272 or by emailing caroline.dolan@smasupportuk.org.uk

#bournemouthmarathonfestival #bournemouth #running #runningfestival #runningforacause #runningcommunity #october2017 #marathon #halfmarathon #10k #5k #junior5k #junior2k #juniorraces #kidskilometre #challengeyourself #challengeaccepted #helpus #helpfortoday #fundraiser #fundraisinginitiatives #sma #spinalmuscularatrophy #smasupportuk #spinalmuscularatrophysupportuk
Our services are only possible thanks to the kindness and generosity of our supporters. Thank you to everyone who makes a regular monthly gift by direct debit or standing order; your support makes a huge difference. If you're thinking of setting up a regular donation with us, you can do so and find out more here: http://bit.ly/1lqpBrC

#thankyou #thanks #supportservices #helpus #helpfortoday #regulargiving #donation #monthlygift #support #ourservices #makeadifference #directdebit #standingorder #findoutmore #smasupport #sma #spinalmuscularatrophy #smasupportuk #spinalmuscularatrophysupportuk
'Inspirations' Autumn 2017 will be going out soon to everyone who is on the mailing list. This biannual newsletter tells you about our services and all the latest news. This edition will also include lots of exciting updates about upcoming fundraising initiatives, details for 2017's Winter Events, and order forms for our Christmas merchandise. You can choose to receive this newsletter either by post or email. Sign up here: http://bit.ly/1OkdcWr 
#inspirations #newsletter #signupnow #smacommunity #latestnews #latestupdates #smanews #sma #spinalmuscularatrophy  #winterevents #eventsinfo #orderform #getintouch #getinvolved #fundraisinginitiatives #fundraisingnews #supportservices #support #information #autumn🍁 #autumn2017 #christmas2017 #mailinglist #signup #smasupportuk #spinalmuscularatrophysupportuk
Huge thanks to Nelly Gillespie who donated his leaving gift collection to SMA Support UK in memory of Nelle Francis. Nelly has worked at Harwich and Dovercourt High School for five years and moves on to work in China - we’re very grateful to both him and the school who continue to support SMA Support UK in memory of Nelle Francis.

#donation #collection #thankyou #raisingfunds #inmemory #support #harwichanddovercourthighschool #smaawareness #sma #spinalmuscularatrophy #smasupportuk #spinalmuscularatrophysupportuk
Father and son, Kevin and Conor Burton, are currently walking Wainwright’s Coast to Coast to raise funds for SMA Support UK!  We hope it’s going really well. You can sponsor them here: http://bit.ly/2fedcmj

#spinalmuscularatrophysupportuk #smasupportuk #sma #spinalmuscularatrophy #runningcommunity #runners #runnersofinstagram #charity #fundraising #makeadifference #coasttocoast #coasttocoastchallenge #wainwright #wainwrightwalks
We hope our new information sheet, 'Nusinersen for children with SMA Type 1: Information for families' will help parents considering this very personal decision - http://bit.ly/2hNz1Kl

#nusinersen #spinraza #sma #smatype1 #spinalmuscularatrophytype1 #spinalmuscularatrophy #information #informationresources #informationproduction #informationstandard #smasupportuk #spinalmuscularatrophysupportuk