We are so sad to be sharing this news 💔 Our sunshine has passed. rip.ie/death-notice/d…
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SavingDylan.com
827 posts
SavingDylan.com
@SavingDylan_com
To promote & support research that will lead to positive clinical outcomes & quality of life for patients suffering from Multiple Sulfatase Deficiency. CHY21493
Dublin, Ireland Katılım Şubat 2015
818 Takip Edilen527 Takipçiler
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
Health Research Charities Ireland - HRCI@HRCIreland
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-20…
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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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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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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
Alan Finglas@AlanFinglas1
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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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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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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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👏
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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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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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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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@RareDiseasesIE @CHIatCrumlin Congratulations Anne Lawlor. Very well deserved 👏
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Many in rare disease community will know Anne Lawlor. Today her tireless advocacy for her daughter, those living with 22Q11 deletion syndrome and all living with rare diseases has been acknowledged with a HSE Excellence Award for the 22Q clinic @CHIatCrumlin
BIG CONGRATS👏👏👏
22Q11 Ireland@22Q11_Ireland
@22q11Europe @22qFoundation @RareDiseasesIE @rareireland @sujas15 #HSEExcellenceAwards @HSE_HR
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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
The Journal of Inherited Metabolic Disease@JIMD_Editors
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.1…
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A superb new paper published on Biochemical signatures of disease severity in Multiple Sulfatase Deficiency doi.org/10.1002/jimd.1…
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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Our call for research proposals for the HRCI-HRB Joint Funding Scheme is live on our website: savingdylan.com/research-2023-…
@HRCIreland @hrbireland
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Watch Dr. Lars Schlotawa of @yourUMG & @FraunhoferITMP talking about the wonderful programme in collaboration with @REMEDi4ALL & @EatrisEric
tinyurl.com/Lars-Schlotawa…
More here:
tinyurl.com/Remedi4All-MSD
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This is a win for MSD and all of the dedicated people around the world that make a difference 💙
Alan Finglas@AlanFinglas1
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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