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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Team Hollie are once again organising a fabulous fundraising ball and tickets are on sale now, with a free ticket for anyone who has SMA. The 1970s-themed event is taking place on Saturday 11th May 2019 at the Copthorne Hotel in Dudley and you can see all the event details at https://bit.ly/2xCSPV9 If you would like to buy tickets for the Party Of The Year, please email: Caroline.dolan@smasupportuk.org.uk 
#teamevent #teamhollie #fundraising #fundraisingball #ball #sma #spinalmuscularatrophy #partyoftheyear #partytime #2019party #family #smacommunity #communityevent #tickets #booknow #smasupportuk #smauk #spinalmuscularatrophysupportuk #spinalmuscularatrophyuk
NICE have announced that the public registration facility to observe the committee meeting about nusinersen on 23rd October will open tomorrow on their website. To find out more about booking and to see the meeting's agenda, please go to our website: https://bit.ly/2QURlcf

#nusinersen #spinraza #nice #agenda #meeting #public #registration #october #sma #spinalmuscularatrophy
This Saturday 29th September is UK SMA Awareness Day! Throughout the day we will be sharing posts and tweets, alongside infographics and statistics, so we're asking you, the SMA Community, to share and retweet these to help raise as much awareness of SMA as possible. Please do ask your family and friends to join in on the day as well so that, working together, we can have the biggest impact possible. We will also be sharing some exciting news about our new app, a video from our April Weekend, and an 'SMA Voices' from a young adult who has SMA Type 2. 
#uksmaawarenessday #awarenessday #smaawareness #raisingawareness #whatissma #helpus #helpfortoday #spreadtheword #joinourcampaign #joinin #getinvolved #smacommunity #smavoices #youngadult #applaunch #ehp #impact #smasupportuk #spinalmuscularatrophysupportuk #sma #spinalmuscularatrophy
Regular Giving is vital in helping us to continue to provide our services to families affected by SMA and any amount will make a difference. If you are considering being a regular giver, you can find more information at: https://bit.ly/1IqpBrC 
#regulargiving #thankyou #helpfortoday #ourservices #supportservices #families #sma #spinalmuscularatrophy #helpfortoday #ourfuture #everylittlehelps #giving #charity #donation #regulardonor #smasupportuk #spinalmuscularatrophysupportuk
A huge THANK YOU to Yvonne from our Fundraising Team and her friends and family - Amy, Mike & Anya - who took on the massively challenging Warwickshire Wolf Run and raised £340.  Well done team! Booking is now open for the Winter Wolf and you can find out more here: https://bit.ly/2kMUIXP 
#wolfpack #wolfrun #runnersofinstagram #muddy #mudrun #running #teamwork #team #sma #spinalmuscularatrophy #family #friends #thankyou #superstars #warwickshirewolfrun #winterwolf #challengeyourself #getinvolved #helpfortoday #spinalmuscularatrophysupportuk #smasupportuk
Fifteen MPs/their representatives came to show their support at MDUK's Parliamentary drop-in session on 11th September about access to nusinersen; we talked with many of them. We are now asking you to write to you MP requesting that, if they haven't already done so, they write to Biogen, NICE and NHS England urging them to ensure that negotiations for a Managed Access Agreement are successfully concluded by the end of October. Find a template letter on our website: https://bit.ly/2NnglAt

#mps #parliament #nusinersen #spinraza #access #managedaccess #agreement #writetoyourmp #shareyourviews #joinourcampaign #speakupforsma #helpfortoday #biogen #nice #nhsengland #smasupportuk #spinalmuscularatrophysupportuk
SMA Support UK is accredited to The Information Standard scheme. This means that we are certified as a provider of high quality health and social care information. We are also signposted by NHS Choices. We're always working to keep our information as accurate as possible, including recent changes to update it in line with the 2017 International Standards of Care. Over the next few months, we'll also be developing and integrating our Route Maps into the website section, 'Living with SMA'. #informationstandard #information #standardsofcare #livingwithsma #spinalmuscularatrophy #sma #routemaps #resources #accurate #development #integration #smacommunity #smasupportuk #spinalmuscularatrophysupportuk
It might be a bit early for some (!) but for those who just can't wait until December, Christmas cards are now on sale (just some of the selection are pictured here) and we have reduced our prices this year so grab a bargain today. Take a look at what is on offer here: https://bit.ly/2fDimZD 
#christmascards #supportus #helpus #grababargain #shopping #merchandise #raisingfunds #smacommunity #shoppersofinstagram #helpfortoday #christmas2018 #smauk #smasupportuk #spinalmuscularatrophysupportuk #sma #spinalmuscularatrophy
SMA Support UK has held a range of information, support and social events over the years. Back in April, we held a weekend which focused on treatments and research, Standards of Care, and 'Keeping Active and Having Fun. Around 300 people attended - that's 90 family groups! Bookings for our upcoming Autumn / Winter 2018 events are currently open as well. We hope you'll be able to join us at one of these informal, social events to meet up with others affected by SMA. Find out more: https://bit.ly/2CFSmXU

#smasupportukevent #socialevents #informationevents #smacommunity #community #communityevent #sma #spinalmuscularatrophysupportuk #smasupportuk #spinalmuscularatrophy #standardsofcare #keepingactive #havingfun #social #support #peersupport #booknow #autumnevents #uksmaawarenessday
Thank you so much to Sarah Wilson who held a Coffee & Cake Day and raised an amazing £641 towards Sam & Alex's SMArt Fund. If you are feeling in the mood to bake, order your free fundraising pack at: https://bit.ly/24SwAFy

#thankyou #charitytuesday #smartfunds #raisingfunds #fundraisingstars #charity #smacommunity #communityevent #coffeeandcake #coffee #cake #baking #bakersofinstagram #bakingforacause #charitybake #helpfortoday #sma #spinalmuscularatrophy #smasupportuk #spinalmuscularatrophysupportuk
Thank you to those who responded to our survey asking for your views on newborn screening. You can read our response to the UK National Screening Committee review of screening for SMA, on our website, where we concluded that a further urgent review of a newborn screening programme for 5q SMA in the UK is imperative: https://bit.ly/2NDVoR2

#survey #smacommunity #review #screening #geneticscreening #newbornscreening #newborn #sma #spinalmuscularatrophy #yourviews #thankyou #surveyresponses #smasupportuk #ourresponse #spinalmuscularatrophysupportuk
QEF are holding a mobility open day on Friday 5th October in Carshalton. Free to attend for families and professionals alike, there will be more than 30 exhibitors demonstrating vehicles with adaptations and plenty of advice, plus wheelchair and scooter manufacturers. There's also the chance of a free mini assessment if you book in advance. Find out more: https://bit.lt/2MNjbxo 
#mobility #adaptations #freeevent #advice #wheelchair #adaptations #vehicles #wheelchairaccessible #families #professionals #scooter #assessment #event #sma #spinalmuscularatrophy #qef