SMASupportUK

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

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

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Last week was Carers Week - an annual campaign to raise awareness of caring, recognise the contribution carers make to families and communities, and highlight the challenges they face. One such challenge can be around finding flexible working hours. Carers UK have information on their website and a free, downloadable guide on your right as a carer to request flexible working. Find out more: https://bit.ly/2LR9xWj

#carersweek #campaign #raiseawareness #carer #families #communities #flexibleworking #workinghours #information #yourrights #contribution #freeguide #freeinformation #sma #spinalmuscularatrophy
A huge thank you to Nita and Dennis Bastock who raised £500 through craft fairs last year and doubled this by putting it through The Big Give Christmas Challenge. Their fantastic fundraising will be added to the Shirley Ann Harris Angel Fund - thank you both so much for your support! 
#raisingfunds #fundraiser #craft #sewing #sewingbox #craftfundraiser #angelfund #thankyou #thursdaythankyou #support #helpfortoday #smacommunity #craftfair #artsandcrafts #biggive #biggivechristmaschallenge #sma #spinalmuscularatrophy #smasupportuk #spinalmuscularatrophysupportuk
Biogen has provided a further, more recent update showing what stage their negotiations to agree a funding contract with a country have reached re access to nusinersen. If you are writing or talking to MPs, you may want to use this to point out how far behind the rest of the world the UK is: https://bit.ly/2tbNG4m

#biogen #nusinersen #spinraza #smatreatment #access4all #writetoyourmp #campaign #update #negotiations #uk #sma #spinalmuscularatrophy #smasupportuk #spinalmuscularatrophysupportuk
After surveying nearly 4,000 adults of all ages who need care or who look after someone with care needs, the Care and Support Alliance (CSA) discovered that people are unable to get the basic care and support they need. Add your voice to their campaign and sign the petition to end the care crisis: https://bit.ly/2HILzuf

#care #careandsupport #carers #speakupforsma #addyourvoice #shareyourviews #campaign #carecrisis #csa #basicneeds #petition #sma #spinalmuscularatrophy
A statement came out yesterday on the Scottish Government website that explains how patients with rare diseases in Scotland could get faster access to new treatments following a revised decision-making process. The Scottish Government is introducing a new definition of 'ultra-orphan medicines' that can treat rare conditions. Read more: https://bit.ly/2tiYJlX

#scottishgovernment #scotland #raredisease #rarecondition #treatment #fasteraccess #newtreatments #medicines #sma #spinalmuscularatrophy
We still have a couple of places available for the Great Scottish Swim - a one-mile open water swim in the stunning setting of Loch Lomond. An SMA Support UK place is just £25 and we will offer you lots of support with your fundraising. Find out more at: https://bit.ly/2iTGqVz

#openswim #wildswimming #swimmersofinstagram #swim #swimming #challenge #loch #lochlomond #scotland #greatscottishswim #onemile #fundraising #smaawareness #challengeyourself #sma #spinalmuscularatrophy #smasupportuk #spinalmuscularatrophysupportuk
We have asked Biogen to keep us updated with the latest information on global access to nusinersen as we all continue to advocate for broad access in the UK. Find out more: https://bit.ly/2tbNG4m

#biogen #smaresearch #clinicaltrials #globalaccess #access #broadaccess #uk #global #nusinersen #spinraza #sma #spinalmuscularatrophy #smasupportuk #spinalmuscularatrophysupportuk
Pharmaceutical company Scholar Rock has announced that dosing of the first cohort has been completed in a Phase 1 trial of the experimental drug, SRK-015. Read more in this latest article from our Scientific Research Correspondent, Dr James Sleigh: https://bit.ly/2JOKV39

#scholarrock #smaresearch #clinicaltrial #scientificresearch #research #researchupdate #researchcorrespondent #sma #spinalmuscularatrophy #update #researchnews #smasupportuk #spinalmuscularatrophysupportuk
Are you involved with a school, nursery or other local group who would like to take part in #Shoesday for SMA this July? It is so easy to join in; just pick a date and ask everyone to wear odd shoes, crazy socks or funky tights in return for a donation. Find out more and order your free Fundraising Pack at: https://bit.ly/1qY5Q76 
#fundraising #sma #spinalmuscularatrophy #smasupportuk #spinalmuscularatrophysupportuk #shoesday #communityevent #smacommunity #smaawareness #oddsocks #oddshoes #shoes #shoesaddict #tights #charity #donation
The Great Scottish Walk and Run Festival in Edinburgh on 1st July has something for all ages and fitness abilities, from a Toddle to a 10k and entry starts from just £5! Find out how you could sign up and raise money for SMA Support UK at: https://bit.ly/2M6v2DN 
#fundraising #sma #spinalmuscularatrophy #smasupportuk #spinalmuscularatrophysupportuk #scotland #run #walk #runnersofinstagram #getthosetrainerson #walkersofinstagram #walkingboots #smaawareness #challengeyourself #community #edinburgh #julyevent
Did you know that SMA Support UK sends out free multisensory toypacks to babies in the UK who have been diagnosed with SMA Type 1 or SMARD? The packs have been designed to offer entertainment during the day, fun at bath time and comfort at bedtime. In 2017, we sent out 31 toypacks to families across the UK.

#multisensory #toys #toypack #multisensorytoys #sensoryplay #sensorytoys #babies #sma #smatype1 #smard #diagnosis #spinalmuscularatrophy #daytime #nighttime #bathtime #comfort #uk #smafamilies #family #smasupportuk #spinalmuscularatrophysupportuk #supportservices
We have received the following update from Roche about the SUNFISH study, investigating RG7916 in people with SMA Types 2 or 3, which will now not be recruiting in the UK: https://bit.ly/2JlWDcl

#roche #clinicaltrial #study #smaresearch #spinalmuscularatrophy #research #update #uk #ukclinicaltrials #smatype2 #smatype3 #researchupdate #recruitment #smasupportuk #spinalmuscularatrophysupportuk