Top Tweets for #SavingDylan
How great is this? The world's tallest building in Dubai lit for #RareDiseaseDay, funded by the Loulou Foundation. Thanks also to my niece Amy Hinksman & friend Aoife Maher for getting involved in an awareness walk in Dubai. More of this is much needed #TreatCureMSD #SavingDylan
Great Night for my cousins Annual Charity Ball , on world rare disease day I hope this country could take a leaf out of Dubai’s book for days like this really not enough done for it here hopefully we can get there 🤞🏼🌈 @SavingDylan_com #RareDiseaseDay #savingdylan #makeachange
@EvaGreenWeb Thank you for sharing😊 We are on the road to doing something wonderful for patients suffering from Multiple Sulfatase Deficiency #TreatCureMSD #SavingDylan #CureMSD
@paulallenpr @campaignforleo Thank you very much Paul. It doesn't have to be this way. Research that focusses on bench to bedside treatment is the answer! Some good progress but more support needed to #TreatCureMSD #SavingDylan
Dylan settling down tonight at Temple St. Hospital. Surgery tomorrow: Reconstruction Op on both hips & tendon release on both ankles. A tough 6 week recovery ahead but please God then there will be less pain after. Please support us to #TreatCureMSD 💙 #SavingDylan
A big thank you to Dan O' Mahony @dan0mah for completing The Befast Marathon & raising 557euro. Also, big thanks to Orla Keogh @formationfitnes for completing The Great Limerick Run raising 951euro for #SavingDylan Orla also hosted a coffee morning. Thanks to all the supporters
@kendoherty1997 Great pic. We had a great night on Friday also when Steve done an exhibition for #SavingDylan it raised 1125euro. 75K is massive, if all charities have not been appointed please consider SavingDylan
@FAIreland @moloney_lyn @ShaneLong7 @kdkilbane77 Great for Dylan to meet the Ireland soccer team yesterday. Please support Team #SavingDylan also in any way possible. #johnoshea #COYBIG #ThanksJosh RT's welcome.
https://t.co/osgTioPbxy
Let's try get this raffle moving! There was great response on the first few days :) Please share, tag friends, donate, message friends.....
#leinsterrugby #savingdylan #raffle #COYBIB
From Michelle & Alan, we are delighted to say that Dylan is now a big brother. Its a boy 8lbs 5oz. We cannot wait for the boys to meet 😁 Thanks for all the well wishes. Name TBC. A huge thanks for your support in the past & please God in the future #SavingDylan
More exciting research news!Another MSD research contract has been executed. The project is progressing but we only agreed contracts last week. More news on this & other research projects soon. With your support we will help to treat or cure MSD. #SavingDylan
Alan Finglas gave a presentation to Amicus Therapeutics at a recent 'Lunch & Learn' session in London. It was great to meet & give an overview of some of the MSD research we are pursuing. Thank you to Garreth & all at Amicus for the very warm welcome. @amicusrx1 #SavingDylan
You have a lot to be proud of @SavingDylan_com. Pulling together the findings of research, to guide clinical care, is not easy but will make a real impact. #PPI #PatientsInvolved #SavingDylan https://t.co/eoQ0WgMvLm
We are very proud of this publication. Complex care of patients with Multiple Sulfatase Deficiency. A new benchmark that will stand the test of time.
https://t.co/XTgLjv0Uiq @MRCGie @MPSSocietyUK @MPSSociety
Today is #WRDD2018 @thismorning 350 million people globally suffer from Rare Disease. Please share or mention on your show today.
Any donations to rare disease charities or even #SavingDylan would be wonderful on this very important awareness day
Every day that Dylan smiles like this is wonderful. Please support MSD Action Foundation/ SavingDylan so we can help Dylan & other children suffering from MSD & keep them smiling. We must deliver a treatment that will give the best possible quality of life to many. #SavingDylan
Dylan is always a happy boy when Irene takes great care of him every Thursday afternoon. There are always laughs & smiles. Happy days are very precious. #SavingDylan
Good morning, here is something for your February diary and a worthy event to support @SavingDylan_com #savingdylan
Happy new year to you, our wonderful supporters & friends. Thank you for your support. Please make it one of your new years resolutions to think of #SavingDylan if there is anyway you can help out in 2018. See our post for our Ball in Feb. Best wishes from all at TeamSavingDylan
A big thank you to Jimmy Murphy, Paul Somers, customers & friends of The MEZZ, Temple Bar. 1236euro raised for #SavingDylan Many thanks to Jimmy's for the initiative with help from Paul Somers. Thanks also to Slim Denby & Sugar Dave.
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