Sign up to our second local FSHD awareness day using the link below. This event was a smash hit last year and we can't wait to run it again! #WorldFSHDday #RareDisease

Now for our big news... I'm delighted to announce that the UK FSHD Patient Registry has now 🌟 RELAUNCHED 🌟 onto our new bespoke registry platform, with improved questionnaires and features! Visit our website to learn more and sign up today! 👀 www.fshd-registry.org.uk 👀 #FSHD #WorldFSHDday

We were fortunate to attend the @fshdsociety.bsky.social International Research Congress and FSHD Europe Patient Connect meetings last week. These fantastic events brought together the FSHD community across Europe to make new connections and share research advancements #WorldFSHDday

🍊 Today is World FSHD Day! 📅 Held on June 20th to raise public awareness of #FSHD 🧬 Our Patient Registry helps advance research and development of treatments, therapies, and care for all those diagnosed with FSHD in the UK. 💻 Visit our newly revamped website to learn more: fshd-registry.org.uk

I'll be attending the #MDUK Northern Ireland Info Day in a few weeks' time to present the @jwmdrc-registries.bsky.social. Come to our registries stand to learn about how we can support #NMD families, improve equality of access to #trials, and advance #research into these rare genetic conditions...

Fantastic turnout for today's #MyotonicDystrophy awareness day, and lots of interest in signing up to the registry! Learn more about how our team support #NMD patient and research communities by visiting our website JWMDRC.org/networking/registries 💚💬🧬🤝👀

Looking forward to the MDSG #MyotonicDystrophy Patient Awareness day today. I'm on the agenda to talk about the registry this morning, and we'll be on hand to answer questions all day 💚 Visit MDSG's website for more info... www.myotonicdystrophysupportgroup.org/about-mdsg/

The UK #MyotonicDystrophy Patient Registry contributed anonymous data from our verified #DM2 patients for this impressive research paper. See more projects and publications we've supported on our website - www.dm-registry.org.uk #RareDiseaseDay

✨In 2022, the amazing Sarah & her incredible daughter Zoé shared a bit about their experiences living with #myotonicDystrophy & how finding MDF's support programs changed their lives. 💚🗣️Learn how you can amplify DM this #RareDiseaseDay and change the future of DM at: www.myotonic.org/rare-disease...

I'm proud to represent the UK #DM #PatientRegistry on the #MyotonicDystrophy Global Alliance 💚🎗️ This expert group demonstrates the power and importance of international collaboration in the fight against rare conditions, read more below... 🇬🇧🤝🌍 #RareDiseaseDay #NMD #DM1 #DM2 #neuromuscular

We couldn't run the #UK #MyotonicDystrophy #Patient #Registry without the generous contributions of our charity supporters. This #RareDiseaseDay, please consider donating to help them continue their fantastic work! 🧡 musculardystrophyuk.org 💚 myotonicdystrophysupportgroup.org 💛 curedm.co.uk

The @jwmdrc.bsky.social national patient registries for #FSHD and #MyotonicDystrophy are proud to support #RareDiseaseDay! Our work to help advance #neuromuscular research is not possible without pioneering patients, parents & families sharing their health data - a huge ⭐️THANK YOU⭐️ to you all! 👏🏅📝

Looking forward to our first Rare Disease Day on #Bluesky tomorrow! 🦋📅 The registries team are preparing our online content today using free resources provided by www.rarediseaseday.org 🖐️🧬 Please help to share information and raise awareness by reading & sharing #RareDiseaseDay posts on #28Feb 👀💻

Pink Ladies are bouba, Granny Smiths are kiki. I will be taking no further questions. #Bouba #Kiki #Apples

Do you know a woman or girl who has made a positive impact in Newcastle? For #IWD2025, we're joining Newcastle Council to celebrate inspirational women shaping our city & making a difference in our communities 💜 To nominate visit 👇 forms.office.com/Pages/Respon... #WeAreNCL

The curators' meeting was also a fantastic opportunity for our newest team members, Data Coordinators Lucy and Aleks, to learn more about the network and meet the rest of the TGDOC family. They presented registry posters, made lots of valuable connections and represented our team brilliantly! 👏🧬

Great to see so many of our global registry network colleagues at the TREAT-NMD Annual curators meeting in Milan this week! 🌍🤝 Our registries team were involved throughout, leading disease subgroup discussions, presenting our registries and making new connections with registries around the world...

The combined feeling of relief and frustration when you finally crack the mysterious logic of your hotel room light switches... 😂💡

We are celebrating a publication describing the efficacy of a new MRI sequence call sodium MRI to detect early damage in skeletal muscle of individuals after an exercise. This is a collaboration between MRI centre & JWMDRC funded by Jain Foundation through the COS study. 🙌 bit.ly/4gviylW

We have a new social media account on BlueSky alongside our previous accounts, so please follow us for updates on the translational research we do that brings diagnosis, care and therapy to people living with neuromuscular diseases! 🙌

👀 💰 Are you searching for #funding for your #FSHD #research? 🧬🌐 This FSHD Society webpage has information on funding opportunities and grant calls currently available from funders all over the globe... www.fshdsociety.org/grants/

#MuscularDystrophy #UK (@mdukcharity.bsky.social 👋) have launched a patient survey to help develop their new strategy. 🗣️ Ensure your #PatientVoice is heard! Complete the survey here before it closes on 17 Feb: loom.ly/F45mAwg 📝 #Neuromuscular #NMD #MyotonicDystrophy #DM1 #FSHD #SMA

Zooming in on the ultimate connection! 🔬 💥Feast your eyes on this stunning electron microscopy image of a neuromuscular junction #EMFriday #ElectronMicroscopy

Home to our patient registries team, and a world-leading centre of #MuscularDystrophy research, The John Walton Muscular Dystrophy Research Centre (JWMDRC) is now on Bluesky here @jwmdrc.bsky.social Please follow JWMDRC for news, events and information on #translational #neuromuscular #research

Excited to see #FSHDEurope and @fshdsociety.bsky.social announce the first FSHD Connect Europe meeting will be held this summer! This patient-focussed event should be a great opportunity to network with other #FSHD families, researchers and clinicians. 🔎 fshd-europe.info/fshd-connect... 🍊 🧬 🌍 🇪🇺

Thinking today of John Sulston's words on the completion of the Human Genome. "Let us continue to work together to ensure that the enormous benefits from this new knowledge flow to all and not just to the few.” I think, in the next few years, we will have to fight to keep this vision alive.

Well this is... not good

The UK #MyotonicDystrophy Registry will participate in the #MDUK Adult Myotonic Dystrophy Virtual Information Seminar on 14th Jan. This is for anyone living with #DM, their friends, family and carers, and includes a live Q&A session with healthcare, data and support experts! Info: bit.ly/MDUKDMJAN25

Neuromuscular diseases can cause disabilities and affect patients in may different ways. Today is International Day of Persons with Disabilities, learn more about the campaign here: www.un.org/en/observanc... 🧬♿🌐 #IDPD #DisabilityHistoryMonth #NMD #Disability #Awareness

What is #MyotonicDystrophy? How does it affect the body? Why is personalized care so important? Watch our NEW animation 🎥 “Understanding Myotonic Dystrophy - The Basics” to learn more! 🌟 Perfect for families and healthcare providers! 💡 Help spread DM awareness - share now! 💚 youtu.be/cVEwn4Hy0kc

Wow, the UK #FSHD Patient Registry now has 999 active patients!!! 👀 Party popper at the ready... 🎉

Some really interesting and informative presentations today from Prof Giorgio Tasca, Emma Robinson, Raj Badiani and Jose Verdu Diaz (pictured below) among many others! #FSHDEngagementDayNcl

We are supporting the #FSHD Awareness Day in Newcastle today, learn more about the national registry for patients here: bit.ly/ukfshdreg

Delighted to be presenting at this event today! I'll be sharing information, supporting new registrations, and answering questions about the UK #FSHD Patient Registry, as well as meeting more of our local community members. Get in touch to learn more or visit www.fshd-registry.org.uk 💻