Founder/Research Manager of MSD Action Foundation, my son is affected by Multiple Sulfatase Deficiency, a clinically devastating Lysosomal Storage Disorder.
Dublin, Ireland
Joined November 2014
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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
I am so sad to be sharing this news 💔 Our sunshine has passed
rip.ie/death-notice/dylan-fi…
Wonderful news 👏
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…
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/
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=wIej…
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
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!
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.
Alan Finglas retweeted
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
@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👏
Brilliant News @LesMartin_Ire & @DonnellyStephen
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
Alan Finglas retweeted
Here is a link to the publication which its really important as it can, will & is leading to further MSD research that needs to be done in order to move towards therapies. tinyurl.com/MSDiPSC
Alan Finglas retweeted
A huge thank you to the prinicipal investigators Rebecca Ahrens-Nicklas & Beverly Davidson & all of the authors for your very important work. A special mention to Vi Pham for your hard work on this project & to the director of the pluripotent stem cell core Deborah French at CHOP
Alan Finglas retweeted
compared to undifferentiated cells. This suggests neurons are more sensitive to MSD-induced stress than other cell types. MSD neurons showed defects in early development & differentiation. This provides insights into why patients with MSD have such severe neurologic disease.3/4
Alan Finglas retweeted
These human cells can be converted into the key cell types that are affected in patients with MSD. For the first time the team identified that iPSC-derived neurons show more hallmarks of MSD, including lysosomal stress, GAG accumulation & reduced enzyme activity, 2/4
Alan Finglas retweeted
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
A brilliant visual abstract of a new publication on biomarkers for Multiple Sulfatase Deficiency. Their reproducibility & our confidence that this informs us on the worst affected biomarkers to look at gives me great confidence that they will help clinical trials #TreatCureMSD
New #visualabstract created by @AhrensNicklas hi-lighting this recent publication exploring possible biomarkers in Multiple Sulfatase Deficiency.
Identification of biomarkers is a vital step forward to help facilitate clinical trials in rare disease.
doi.org/10.1002/jimd.12688
Dr. Lars Schlotawa has moved mountains in pursuit of therapies for MSD. We have been blessed in finding such a wonderful doctor and scientist and soon to be Professor. #TreatCureMSD
Watch Dr. Lars Schlotawa of @yourUMG & @FraunhoferITMP talking about the wonderful programme in collaboration with @REMEDi4ALL & @EatrisEric
tinyurl.com/Lars-Schlotawa-M…
More here:
tinyurl.com/Remedi4All-MSD
I am very honoured to be awarded with the WORLDSymposium 2024 Patient Advocate Leader (PAL) Award. More here: tinyurl.com/PAL24award
Its the largest Lysosomal conference in the World with approx 3K attending annually. To all that have helped on our journey so far, thank you 😊
Delighted to see my friend Andrew is going to do the Dublin marathon again to help #TreatCureMSD idonate.ie/fundraiser/Andrew… #iDonate_ie
If you have something to donate I would be grateful
Alan Finglas retweeted
Well done @mark_fitzpat @nevrossdublin for years of advocacy to ensure that Family carers set to qualify for state pension from 2024 | Business Post businesspost.ie/politics/fam…