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Reposted by Helen Walker

JWMDRC Patient Registries @jwmdrc-registries.bsky.social · 28/02/2026

Our national and international #neuromuscular patient registries are proud to support #RareDiseaseDay! Learn more about our work at jwmdrc.org/networking/registries #LightUpForRare #ShareYourColours

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Reposted by Helen Walker

JWMDRC Patient Registries @jwmdrc-registries.bsky.social · 20/06/2025

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

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Reposted by Helen Walker

JWMDRC Patient Registries @jwmdrc-registries.bsky.social · 20/06/2025

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

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Reposted by Helen Walker

JWMDRC Patient Registries @jwmdrc-registries.bsky.social · 20/06/2025

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

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Reposted by Helen Walker

JWMDRC Patient Registries @jwmdrc-registries.bsky.social · 20/06/2025

🍊 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

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Helen Walker @helenwalkerncl.bsky.social · 14/05/2025

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...

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Helen Walker @helenwalkerncl.bsky.social · 29/03/2025

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 💚💬🧬🤝👀

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Helen Walker @helenwalkerncl.bsky.social · 29/03/2025

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/

myotonicdystrophysupportgroup.org

About MDSG - Myotonic Dystrophy Support Group

About us Myotonic Dystrophy Support Group is a registered charity, founded by […]

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Helen Walker @helenwalkerncl.bsky.social · 28/02/2025

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

dm-registry.org.uk

Home - UK Patient Registry for Myotonic Dystrophy

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Reposted by Helen Walker

Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 27/02/2025

✨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...

youtu.be

2022 Gala Sarah Zoe FNL

YouTube video by Myotonic Dystrophy Foundation

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Helen Walker @helenwalkerncl.bsky.social · 28/02/2025

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

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Helen Walker @helenwalkerncl.bsky.social · 28/02/2025

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! 👏🏅📝

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Reposted by Helen Walker

JWMDRC Patient Registries @jwmdrc-registries.bsky.social · 27/02/2025

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 👀💻

rarediseaseday.org

Rare Disease Day 2025 – Raising awareness for people living with rare diseases and their families worldwide.

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Helen Walker @helenwalkerncl.bsky.social · 19/02/2025

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

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Reposted by Helen Walker

Newcastle University @newcastleuni.bsky.social · 12/02/2025

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

A group of individuals engaged in a lively discussion around a table, with one person standing and leaning over to look at a document that another person is showing. Everyone is smiling and appears engaged in the conversation. The setting looks like a classroom or workshop environment.

A person presenting a statistical graph on a projector screen during a seminar, with the audience in foreground listening attentively.

A group of six individuals engaged in a discussion around a table in a classroom. One person is standing, pointing at a document on the table, while the others, seated, look on attentively. A whiteboard with the word "Homework" and a diagram is visible in the background.

Person wearing a hijab using a Ruskin Bug Box Plus in a laboratory setting.

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Reposted by Helen Walker

JWMDRC Patient Registries @jwmdrc-registries.bsky.social · 12/02/2025

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! 👏🧬

Data Coordinator Lucy with registry posters

Data Coordinator Aleks with registry posters

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Reposted by Helen Walker

JWMDRC Patient Registries @jwmdrc-registries.bsky.social · 12/02/2025

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...

Registry manager Helen co-leading the FSHD registries subgroup

Registry manager Sam presenting updates on the global FKRP registry

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Helen Walker @helenwalkerncl.bsky.social · 11/02/2025

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

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Reposted by Helen Walker

John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 07/02/2025

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

bit.ly

Rapid Quantitative Assessment of Muscle Sodium Dynamics After Exercise Using 23Na‐MRI in Dysferlinopathy and Healthy Controls

You have to enable JavaScript in your browser's settings in order to use the eReader.

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Reposted by Helen Walker

John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 07/02/2025

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! 🙌

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Helen Walker @helenwalkerncl.bsky.social · 05/02/2025

👀 💰 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/

fshdsociety.org

Grants | FSHD Society

The FSHD Society offers investigator-initiated research grants to support basic, translational and clinical-based research in FSHD.

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Reposted by Helen Walker

JWMDRC Patient Registries @jwmdrc-registries.bsky.social · 31/01/2025

#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

Image with the words 'What do YOU want the world to look like for people with a muscle wasting and weakening condition in 10 years?'

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Reposted by Helen Walker

Stephane Vassilopoulos @stefvass.bsky.social · 10/01/2025

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

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Reposted by Helen Walker

JWMDRC Patient Registries @jwmdrc-registries.bsky.social · 30/01/2025

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

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Helen Walker @helenwalkerncl.bsky.social · 30/01/2025

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... 🍊 🧬 🌍 🇪🇺

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Reposted by Helen Walker

Jonathan Roberts @jonroberts.bsky.social · 23/01/2025

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.

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Reposted by Helen Walker

JWMDRC Patient Registries @jwmdrc-registries.bsky.social · 18/12/2024

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

musculardystrophyuk.org

Myotonic Dystrophy Virtual Information Seminar - Muscular Dystrophy UK

This free, informative, and supportive session will cover topics relevant to adult care. It is open to people living with myotonic dystrophy and their friends, family and carers.

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Helen Walker @helenwalkerncl.bsky.social · 03/12/2024

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

un.org

International Day of Persons with Disabilities | United Nations

The International Day of Disabled Persons aims to promote the rights and well-being of persons with disabilities in all spheres of society and development.

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Reposted by Helen Walker

Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 28/11/2024

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

youtu.be

Understanding Myotonic Dystrophy – The Basics

YouTube video by Myotonic Dystrophy Foundation

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Helen Walker @helenwalkerncl.bsky.social · 29/11/2024

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

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Helen Walker @helenwalkerncl.bsky.social · 29/11/2024

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

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Helen Walker @helenwalkerncl.bsky.social · 29/11/2024

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

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Helen Walker @helenwalkerncl.bsky.social · 29/11/2024

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 💻

fshd-registry.org.uk

Facioscapulohumeral Muscular Dystrophy - UK Patient Registry for FSHD

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