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@INFO_NCPE @HSELive @SimonHarrisTD This drug has the potential to be life changing for Grace and other sufferers. She could lift her head again.....
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FriendsOfGrace
316 posts
FriendsOfGrace
@grace_friends
A legally constituted Irish charity dedicated to supporting Grace in her fight against SMA and to improve her quality of life
Mayo, Ireland Katılım Eylül 2018
130 Takip Edilen260 Takipçiler
We have been told it is unrealistic to expect treatment for Grace this side of Christmas. After such elation in June we didn't think it was possible to experience the depths of despair we currently are 💔💔 #Spinraza #devastated
con-telegraph.ie/news/roundup/a…
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@HSELive please make this happen before the winter weather takes hold
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FriendsOfGrace retweetledi
Last June, 25 child patients in Ireland with debilitating SMA (spinal muscular atrophy) conditions, were told funding had been approved for ‘miracle drug’ Spinraza. @SMAIrelandCom. buff.ly/33WfZEN
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@SimonHarrisTD @MichaelRingFG thanks for taking the time to talk with us today. Grace was so happy to finally meet Minister Harris - "he's quite tall in real life!" We look forward to progressing things with you sooner rather than later.
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#Spinraza was approved 18 weeks ago, we had hoped Grace's trreatment would be well underway by now but to date Grace hasn't even received a date to begin treatment. The elation deflation cycle continues...@HSELive @SimonHarrisTD Winter months are detrimental pleae stop the delays
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FriendsOfGrace retweetledi
Spinraza approval greeted with relief as Friends of Grace delighted with HSE approval after a long and arduous campaign
Full story here: tinyurl.com/y3nt7jl3
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@MichaelRingFG @SimonHarrisTD Thank you both for helping to make this happen.
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We are so delighted that our little Grace will get her best chance at life and we couldn't have done it without you. So from the bottom of our hearts a huge "Thank You" to you all.
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Have we won an Oscar! First the delight, now the fear of forgetting to thank someone. Thank you to every single person be they family, friends, media, politicians or just lovely people who heard our story, for all the messages of help and support over the #Spinraza campaign.
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FriendsOfGrace retweetledi
The approval of Spinraza follows a lengthy campaign by patients and their families.
rte.ie/news/health/20…
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@SimonHarrisTD Thank you Simon, this means everything to Grace and all the other sufferers who will benefit. It was a long hard road and we appreciate the work put in on your side.
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Welcome news today that Spinraza is now approved by the HSE. This is the first ever treatment for children with SMA. I know how hard the long journey to get here has been for families but very glad children in Ireland will now have access
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@SighleH And then there was! Thanks Sighle for all your help on the campaign
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FriendsOfGrace retweetledi
Great day for all the families & friends of #SMA children. Heartbreak, emotion, the meetings, false dawns, broken promises...just to to get to today. This news brought a tear to my eye, and delighted for @grace_friends and all the other kids. #Spinraza is a #LifeChanger
Simon Harris TD@SimonHarrisTD
Welcome news today that Spinraza is now approved by the HSE. This is the first ever treatment for children with SMA. I know how hard the long journey to get here has been for families but very glad children in Ireland will now have access
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@conwaywalsh Thank you @conwaywalsh, your support means alot to us as did your help keeping it on the agenda.
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Welcome News #Spinraza has just been approved by the @HSELive #SpinrazaNow .. Delighted for all the families and children involved.
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@lichamber @radiomidwest @themayonews @WesternPeople @thecontel @MayoAdvert Thanks @lichamber, your support and that of your colleagues across all political parties is greatly appreciated.
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Beyond relieved to see that the government have finally approved Spinraza for SMA sufferers in Ireland. This is fantastic news and I know how much this means for the children and families affected. @radiomidwest @themayonews @WesternPeople @thecontel @MayoAdvert
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@DrKeithSwanick Huge thanks for your support throughout our campaign. Words cannot express our gratitude to all the people who helped us get to today.
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This is fantastic news. There are children alive today who will live happier and healthier lives because of #spinraza. Congratulations to families who fought for so long and so hard to make this happen.
Simon Harris TD@SimonHarrisTD
Welcome news today that Spinraza is now approved by the HSE. This is the first ever treatment for children with SMA. I know how hard the long journey to get here has been for families but very glad children in Ireland will now have access
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@DonnellyStephen Huge thanks Stephen for your support throughout the campaign. We are still absorbing the delighful news.
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@alankellylabour Thank you Alan and to all your colleagues across all parties who engaged with it.
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Delighted with the news today that Spinraza has now been approved by the HSE. This is the first ever treatment for children with SMA. I’m so happy for the children and their families who I’ve met and who’ve campaigned so long for this news.
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