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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Don't forget to book your place at one of our Winter Events 2017! We are holding four events across the UK - Harlow, Bournemouth, Leeds and Northern Ireland (details for Northern Ireland tbc). There is no charge for individuals / families affected or bereaved by SMA to attend, but donations are very welcome. To find out more and to book, please go to: http://bit.ly/2fQUILA

#winterevents #events2017 #events2017🎉 #booknow‼️ #bookingsopen #socialevents #social #christmas2017🎄🎅🎁 #gettogether #smacommunity #christmasfun #santa #getinvolved #harlow #bournemouth #leeds #northernireland #sma #spinalmuscularatrophy #smasupportuk #spinalmuscularatrophysupportuk
Many congratulations to the amazing Carl Rooney who has run 2017 miles this year to raise funds for SMA Support UK! That is the equivalent of 77 marathons! You can read more about why Carl was inspired to take on this challenge here: http://bit.ly/2khFDh7 and help him reach his target of £2017 by sponsoring him here: http://bit.ly/2xxScPK 
#running #runningevent #inspiration #amazing #helpfortoday #helpus #2017challenge #2017miles #2017 #charityevents #runningforacause #thankyou #hero #raisingfunds #raisingawareness #sma #spinalmuscularatrophy #smasupportuk #spinalmuscularatrophysupportuk
The Food and Drug Administration (FDA) has granted permission to AveXis to begin their planned US pivotal trial of their gene therapy drug for SMA, AVXS-101. AveXis say that they are to immediately begin the trial. Find out more in this latest report from our Scientific Research Correspondent, Dr James Sleigh: http://bit.ly/2kJVSHU

#fda #foodanddrugadministration #avexis #sma #spinalmuscularatrophy #researchprojects #researchupdate #clinialtrials #researchnews #scientificresearch #smascience #researchcorrespondent #latestupdates #latestnews #smacommunity #smaresearch #smasupportuk #spinalmuscularatrophysupportuk
Today marks the end of Baby Loss Awareness Week and you can join in with the ‘#WaveofLight’. Simply light a candle at 7pm local time and leave it burning for at least 1 hour to join together in remembering all babies that have died too soon. This can be done individually or in a group, at home or in a communal space. Wherever you do this, you will be joining a global ‘Wave of Light’ in memory of all the babies who lit up our lives for such a short time. You can also join a digital Wave of Light by taking a photo of your candle and posting it on Facebook, Twitter or Instagram using #WaveOfLight at 7pm local time.

#waveoflight #babyloss #babylossawarenessweek #raisingawareness #awareness #inmemory #remember #light #candle #lightacandle #sma #spinalmuscularatrophy #smasupportuk #spinalmuscularatrophysupportuk
Good luck to our teams in the Birmingham Half Marathon, Ipswich Big Fun Run, Manchester Half Marathon and Eden Marathon this weekend! One of our runners, 11-year-old Harry, has written about why he wanted to raise funds for SMA Support UK: http://bit.ly/2z4LMnv Inspired to support us by taking on a similar event? Visit http://bit.ly/21sm9FE

#charity #fundraising #smasupportuk #spinalmuscularatrophysupportuk #sma #spinalmuscularatrophy #greatbirminghamrun #bigfunrun #manchesterhalfmarathon #edenmarathon
The popular Nightrider events series will be back in 2018 with a new city - Glasgow! These 100km or 50km fully supported night-time bike rides will take place in Glasgow on 19-20 May, London on 9-10 June and Liverpool on 14-15 July. To find out more, please visit: http://bit.ly/2yhRGCx

#nightrider #nightrider2018 #glasgow #london #liverpool #cycleride #cycleforcharity #bikeevents #bike #cyclistsofinstagram #onyourbike #getpeddling #helpus #smacommunity #joinin #fundraiser #raisingawareness #helpfortoday #sma #spinalmuscularatrophy #smasupportuk #spinalmuscularatrophysupportuk
Novartis has released a community update for the LMI070 (branaplam) clinical trial: http://bit.ly/2fS7hE1

#novartis #communityupdate #update #scientificresearch #researchupdate #sma #spinalmuscularatrophy #smasupportuk #spinalmuscularatrophysupportuk
The Wilson family raised an incredible £700 at their recent Coffee and Cake Day! The funds will be credited to Aadi's SMArt Fund. Huge thanks to Mark, Panna and Aadi and their family and friends who supported the event. To order your Coffee and Cake Day pack or to set up a SMArt Fund, please contact caroline.dolan@smasupportuk.org.uk

#coffeeandcakeday #cakes #cakeofinstagram #baking #charityevents #charity #fundraisinginitiatives #fundraising #smartfund #raisingawareness #thankyou #helpfortoday #vitalfunds #sma #spinalmuscularatrophy #smasupportuk #spinalmuscularatrophysupportuk
We're looking for volunteers to help us sell our Christmas cards at Stratford-upon-Avon Christmas markets on 23rd November, 30th November and 7th December. Even just a couple of hours between 8am and 8pm would be a great help. Please contact Caroline if you can help: caroline.dolan@smasupportuk.org.uk

Don't forget, our new range of Christmas cards and gifts are now available to purchase online! http://bit.ly/2fDimZD

#helpus #volunteers #volunteer #getinvolved #getintouch #smacommunity #christmas2017🎄🎅🎁 #christmasmarket #christmas #contactus #canyouhelp #sellingcards #christmascards #merchandise #raisingfunds #raisingawareness #sma #spinalmuscularatrophy #smasupportuk #spinalmuscularatrophysupportuk
This week is Baby Loss Awareness Week. As part of this, a coalition of more than 40 charities, including SMA Support UK, is urging an end to the postcode lottery in bereavement care for parents. Find out more: http://bit.ly/2hYhL5v

#babyloss #breakthesilence #postcodelottery #bringanend #40charities #workingtogether #babylossawarenessweek #blaw #bereavement #bereavementcare #getinvolved #smacommunity #sma #spinalmuscularatrophy #smasupportuk #spinalmuscularatrophysupportuk
Huge thanks to Darren Shields and Heather McKnight for taking on the Great Scottish Run last weekend and raising an amazing £800 for SMA Support UK!

#charity #fundraising #smasupportuk #greatscottishrun #scotland2017 #runnersofinstagram #run #runningforacause #thankyou #spinalmuscularatrophysupportuk #sma #spinalmuscularatrophy
Keep track of how much you’ve raised for SMA Support UK with our new SMArt Funds. You may like to name your fund after someone living with SMA or after your family name, like Carl Rooney has done with The Rooney SMArt Fund (http://bit.ly/2fWODLx). You can add online and offline donations and updates, including photos and thank you messages for friends who donate, and see every donation add up. Visit http://bit.ly/2yxNvkS to set up your page or contact Caroline who is happy to set it up for you!

#charity #fundraising #raisingawareness #raisingfunds #getinvolved #smacommunity #helpus #helpfortoday #thankyou #smasupportuk #spinalmuscularatrophysupportuk #sma #spinalmuscularatrophy