Alan Finglas

480 posts

Alan Finglas

@AlanFinglas1

Founder/Research Manager of MSD Action Foundation, my son is affected by Multiple Sulfatase Deficiency, a clinically devastating Lysosomal Storage Disorder.

Dublin, Ireland Katılım Kasım 2014

571 Takip Edilen250 Takipçiler

Alan Finglas@AlanFinglas1·28 Şub

Big News, an ERDERA CHAMPION grant for MSD research approved for 2.1 million Euro. It did not happen by accident! It's worth reading the background & the plan to develop potential treatments for Multiple Sulfatase Deficiency. Read more: savingdylan.com/news #RareDiseaseDay

English

Alan Finglas@AlanFinglas1·31 Tem

linkedin.com/posts/alanfing…

ZXX

Alan Finglas@AlanFinglas1·4 Nis

@barrygboland Thank you Barry

English

Barry Boland@barrygboland·24 Mar

@AlanFinglas1 My thoughts are with you all at this sad time. You gave Dylan a wonderful life and have done so much for research on MSD. His legacy lives on with you 🙏

English

Alan Finglas@AlanFinglas1·23 Mar

I am so sad to be sharing this news 💔 Our sunshine has passed rip.ie/death-notice/d…

English

207

Alan Finglas@AlanFinglas1·12 Şub

@DublinAirport You have only gone and done it? No more of your S-max wheel chairs to go down stairs for getting off standard planes. Tell me you have now matched every other European capital city and got an Ambi lift that can take any disabled wheelchair passenger off any plane that needs it?

English

253

Dublin Airport@DublinAirport·11 Şub

Big news coming. 4pm. ✍️

English

137

407

369.6K

Alan Finglas@AlanFinglas1·17 Ara

@HRCIreland @tcddublin @alzheimersocirl @hrbireland Very well deserved 👏 congratulations Mary

English

Health Research Charities Ireland - HRCI@HRCIreland·16 Ara

🎉 Delighted to announce Prof. Mary McCarron @tcddublin as the winner of the 2024 HRCI Research Impact Award, for her work improving the lives of people with intellectual disabilities & dementia. Research funded by @alzheimersocirl & @hrbireland. 📷 hrci.ie/hrci-hrb-joint…

English

967

Alan Finglas@AlanFinglas1·27 Eki

@LayaHealthcare @Munsterrugby @leinsterrugby @connachtrugby Why won't Laya cover EMA approved immunotherapy for my friend Bernard Mahon?

English

139

Laya Healthcare@LayaHealthcare·8 Eki

1.8 million adults in Ireland experience loneliness, but sport can be a solution. Connacht Rugby, Leinster Rugby and Munster Rugby are working with laya healthcare to combat loneliness in Ireland. We are one. Always. Learn more at layahealthcare.ie/weareone

English

1.7K

Alan Finglas@AlanFinglas1·11 Eyl

Wonderful news 👏

SavingDylan.com@SavingDylan_com

Good news from a research project that we co-funded via the @HRCIreland/@hrbireland Joint Funding Scheme. This makes donations to MSD research go much further than you might imagine! More to come on this wonder piece of research prnewswire.com/news-releases/…

English

233

Alan Finglas@AlanFinglas1·25 Nis

Can I please ask you to nominate us '20100957- Multiple Sulfatase Deficiency' for £5k in the health section. One nomination per person. Today is the last day, thank you in advance movementforgood.com

English

227

Alan Finglas@AlanFinglas1·23 Şub

@mattcampbelltcd @NatureNeuro @Fro_Greene @gastaut @tcddublin @scienceirel Such great work Matt. @sheehangilroy brain fog in PKU

Deutsch

116

Matthew Campbell@mattcampbelltcd·22 Şub

Delighted to see this study published in @NatureNeuro We show blood brain barrier disruption in individuals with Long COVID and cognitive decline. Important implications for future therapies @Fro_Greene @gastaut @tcddublin @scienceirel @Futneuro_ie nature.com/articles/s4159…

English

180

23.3K

Alan Finglas@AlanFinglas1·17 Şub

@annedmicks Thank you

English

Anne Micks@annedmicks·15 Şub

Congratulations @AlanFinglas1 well deserved 👏🏻👏🏻 #RareDisease #awareness #research #advocacy

Alan Finglas@AlanFinglas1

I am very happy to share this video. Thank you to everyone who helped in some way, be it big or small. Much done, more to do. #TreatCureMSD youtu.be/zXMDyJ0bX3c?si…

English

Alan Finglas@AlanFinglas1·17 Şub

@raisingrareness Thank you

English

raising_rareness (Lyndsey Walsh)@raisingrareness·15 Şub

@AlanFinglas1 Congratulations @AlanFinglas1 This is truly a powerful testament on how partnership with families is so important. Incredible 👏 #TreatCureMSD #RareDisease

English

Alan Finglas@AlanFinglas1·15 Şub

I am very happy to share this video. Thank you to everyone who helped in some way, be it big or small. Much done, more to do. #TreatCureMSD youtu.be/zXMDyJ0bX3c?si…

YouTube

English

601

Alan Finglas@AlanFinglas1·14 Şub

Thank you Xinying Hong from Children's Hospital of Philadelphia Research Institute for presenting your excellent poster at #WORLDSymposium, in San Diego. Your superb biomarker research will make an impact for MSD patients & related MPS conditions #TreatCureMSD

English

395

Alan Finglas@AlanFinglas1·10 Şub

Great to see results in San Diego from another MSD Action Foundation funded project. If I take off my MSD parent hat & I put on my scientific hat, the future of MSD research is very exciting!

SavingDylan.com@SavingDylan_com

A very important iPSC neuron poster presented @WORLDSymposia by @margaretmcass of @CHOP_Research. Thank you Margaret & the co-authors for this work including @AhrensNicklas for being a wonderful mentor. This excellent work is really important for translational research on MSD.

English

323

Alan Finglas retweetledi

SavingDylan.com@SavingDylan_com·9 Şub

Amazing results so far. We were delighted to see this @WORLDSymposia in San Diego. Thanks to @hrbireland @HRCIreland for helping to support this superb research project

Alan Finglas@AlanFinglas1

@Vi_Pham20 presents some amazing results on ex vivo gene therapy for MSD. This was co-funded by @hrbireland & MSD Action Foundation @ the @AhrensNicklas & Rivella labs at Children's Hospital of Philadelphia. Vi was awarded with a very prestigious young investigators award also👏

English

334

Alan Finglas@AlanFinglas1·9 Şub

English

747

Alan Finglas@AlanFinglas1·25 Oca

Brilliant News @LesMartin_Ire & @DonnellyStephen

Les martin@LesMartin_Ire

Thanks to all involved in this effort @DonnellyStephen @HSELive @roinnslainte This is only part of the solution tho… we need newborn screening for MLD for this treatment to be of any use. A great step forward today 👍😉❤️@RareDiseasesIE @IPPOSI

English

207

Alan Finglas@AlanFinglas1·17 Oca

@RareDiseasesIE @DonnellyStephen @BernardGloster @CcoHse Ukraine were able to implement a very large expanion of their NBS panel while their country was under siege. See here thelancet.com/journals/lance…. There is no excuse not to act swiftly. Waiting on the new children's hospital is not acceptable either.

English

Rare Diseases Ireland@RareDiseasesIE·15 Oca

Insufficient resources in #NNBSL not an excuse for slow implementation of @DonnellyStephen & #NSAC recommendations for expansion of newborn screening - NBS saves lives! @BernardGloster @CcoHse you must resource lab and accelerate expansion - SCID & SMA awaiting implementation

Medical Independent@med_indonews

Dr Abigail Collins, National Clinical Lead for the HSE Child Health Public Health Programme, speaks to Julinda Schroeder about the achievements of the national children’s screening programmes @HSELive @RareDiseasesIE @CHI_Ireland @IrishDeafSoc ow.ly/5nMR50QoQmt

English

1.3K

Alan Finglas@AlanFinglas1·7 Oca

@SavingDylan_com @AhrensNicklas @Vi_Pham20 @threadreaderapp unroll

English

SavingDylan.com@SavingDylan_com·3 Oca

We are very proud to announce that researchers have developed a valuable new induced pluripotent stem cell (iPSC) model of MSD. MSD Action Foundation supported this work with grants to Children's Hospital of Philadelphia. tinyurl.com/MSDiPSC @AhrensNicklas @Vi_Pham20 1/4

English

193

Keşfet

@barrygboland @DublinAirport @HRCIreland @tcddublin @alzheimersocirl @hrbireland @LayaHealthcare @Munsterrugby