To promote & support research that will lead to positive clinical outcomes & quality of life for patients suffering from Multiple Sulfatase Deficiency. CHY21493
Joined February 2015
- Tweets 827
- Following 817
- Followers 527
- Likes 1,589
311 Photos and videos
23 Mar 2025
We are so sad to be sharing this news 💔 Our sunshine has passed. rip.ie/death-notice/dylan-fi…
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22 Sep 2024
We are delighted to see some world class MSD research co-funded by HRB & MSD Action Foundation. Its an excellent collaboration between @baud_group & Lars Schlotawa of @yourUMG & Prof. Hartmut Niemann of University of Bielefeld
Announcing the 12 projects funded under the HRCI/HRB Joint Funding Scheme! These innovative projects, led by 8 member charities, will tackle key challenges in cancer, rare diseases, dementia, visual impairment, pulmonary disease, & parental mental health.hrci.ie/12-projects-2024-hrc…
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11 Sep 2024
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…
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25 Apr 2024
Can we 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/
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14 Feb 2024
We are extremely grateful to be working with Xinying Hong. Thank you to you, your co-authors, all those that supported this important work & the patient families that gave samples for research purposes #TreatCureMSD
14 Feb 2024
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
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12 Feb 2024
Thank you Livia Finoti from Children's Hospital of Philadelphia for this important iPSC work on MSD. This will enable further MSD research. It was wonderul to see this important poster presented at @WORLDSymposia in San Diego. Thank you @AhrensNicklas #TreatCureMSD
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10 Feb 2024
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.
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9 Feb 2024
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
9 Feb 2024
@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👏
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3 Jan 2024
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
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3 Jan 2024
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
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3 Jan 2024
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
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14 Nov 2023
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 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
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25 Oct 2023
A superb new paper published on Biochemical signatures of disease severity in Multiple Sulfatase Deficiency doi.org/10.1002/jimd.12688
Very important work that will greatly help clinical trials. Thanks to the authors, all that helped & the patient families that gave samples 💙💙💙
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23 Oct 2023
Our call for research proposals for the HRCI-HRB Joint Funding Scheme is live on our website: savingdylan.com/research-202…
@HRCIreland @hrbireland
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20 Oct 2023
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
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13 Oct 2023
This is a win for MSD and all of the dedicated people around the world that make a difference 💙
13 Oct 2023
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 😊
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SavingDylan.com retweeted
29 Jun 2023
We are very excited to announce our conference is going ahead again this year #SaveTheDate, registration opens next week. Stand by to hear our line of of guest speakers!
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