Helen Walker
@helenwalkerncl.bsky.social
UK Myotonic Dystrophy & FSHD Patient Registries Manager at JWMDRC.
Pls follow: @jwmdrc-registries.bsky.social / @jwmdrc.bsky.social
(she/her) *Views my own*
#neuromuscular #nmd #PatientRegistries #dm1 #dm2 #fshd #RareDisease #research #genetic
Pls follow: @jwmdrc-registries.bsky.social / @jwmdrc.bsky.social
(she/her) *Views my own*
#neuromuscular #nmd #PatientRegistries #dm1 #dm2 #fshd #RareDisease #research #genetic
Reposted by Helen Walker
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
Join us for the FSHD Engagement Day in Newcastle on 25 Sept 2025! Connect with others, hear from experts & explore key aspects of life with FSHD.
Book your place: rb.gy/gabmw7
#FSHD #FSHDUK #FSHDEurope #WorldFSHDDay
Book your place: rb.gy/gabmw7
#FSHD #FSHDUK #FSHDEurope #WorldFSHDDay
June 20, 2025 at 2:28 PM
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
Reposted by Helen Walker
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
Visit our website to learn more and sign up today!
👀 www.fshd-registry.org.uk 👀
#FSHD #WorldFSHDday
June 20, 2025 at 1:01 PM
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
Visit our website to learn more and sign up today!
👀 www.fshd-registry.org.uk 👀
#FSHD #WorldFSHDday
Reposted by Helen Walker
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
These fantastic events brought together the FSHD community across Europe to make new connections and share research advancements #WorldFSHDday
June 20, 2025 at 12:58 PM
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
These fantastic events brought together the FSHD community across Europe to make new connections and share research advancements #WorldFSHDday
Reposted by Helen Walker
🍊 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
📅 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
June 20, 2025 at 12:55 PM
🍊 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
📅 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...
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...
Living with, or interested in #Neuromuscular conditions in #NorthernIreland?
Visit qrco.de/bfrgRQ to register for free @mdukcharity.bsky.social Information Day on 4th June.
Our registries team will be there to present our work, answer your questions and support new patient registrations.
🧡👋🧬💻🤝
Visit qrco.de/bfrgRQ to register for free @mdukcharity.bsky.social Information Day on 4th June.
Our registries team will be there to present our work, answer your questions and support new patient registrations.
🧡👋🧬💻🤝
May 14, 2025 at 10:09 AM
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...
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
💚💬🧬🤝👀
💚💬🧬🤝👀
March 29, 2025 at 6:07 PM
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/
March 29, 2025 at 8:17 AM
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
#RareDiseaseDay
February 28, 2025 at 6:29 PM
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
#RareDiseaseDay
Reposted by Helen Walker
✨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...
2022 Gala Sarah Zoe FNL
YouTube video by Myotonic Dystrophy Foundation
youtu.be
February 27, 2025 at 11:06 PM
✨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
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
🌍 This #RareDiseaseDay, the Global Alliance for #myotonicDystrophyAwareness of 60+ orgs unite to advance care & research for #myotonicDystrophy, focusing on: ✅ Educating clinical teams ✅ Enhancing trial readiness 💚 Help us change the future of DM! www.myotonic.org/global-allia...
February 28, 2025 at 4:49 PM
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
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
This #RareDiseaseDay, please consider donating to help them continue their fantastic work!
🧡 musculardystrophyuk.org
💚 myotonicdystrophysupportgroup.org
💛 curedm.co.uk
Together we are stronger - Muscular Dystrophy UK
We connect a community of more than 110,000 people living with one of over 60 muscle wasting and weakening conditions, and all the people around them. So everyone can get the healthcare, support and t...
www.musculardystrophyuk.org
February 28, 2025 at 3:47 PM
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
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! 👏🏅📝
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! 👏🏅📝
February 28, 2025 at 3:31 PM
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! 👏🏅📝
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! 👏🏅📝
Reposted by Helen Walker
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 👀💻
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 👀💻
Rare Disease Day 2025 – Raising awareness for people living with rare diseases and their families worldwide.
www.rarediseaseday.org
February 27, 2025 at 1:47 PM
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 👀💻
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 👀💻
Reposted by Helen Walker
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
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
February 12, 2025 at 11:19 AM
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
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
Reposted by Helen Walker
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! 👏🧬
February 12, 2025 at 3:38 PM
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! 👏🧬
Reposted by Helen Walker
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...
February 12, 2025 at 3:20 PM
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... 😂💡
February 11, 2025 at 10:16 PM
The combined feeling of relief and frustration when you finally crack the mysterious logic of your hotel room light switches... 😂💡
Reposted by Helen Walker
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
This is a collaboration between MRI centre & JWMDRC funded by Jain Foundation through the COS study. 🙌
bit.ly/4gviylW
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.
bit.ly
February 7, 2025 at 10:50 AM
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
This is a collaboration between MRI centre & JWMDRC funded by Jain Foundation through the COS study. 🙌
bit.ly/4gviylW
Reposted by Helen Walker
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! 🙌
February 7, 2025 at 9:40 AM
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/
🧬🌐 This FSHD Society webpage has information on funding opportunities and grant calls currently available from funders all over the globe... www.fshdsociety.org/grants/
Grants | FSHD Society
The FSHD Society offers investigator-initiated research grants to support basic, translational and clinical-based research in FSHD.
www.fshdsociety.org
February 5, 2025 at 1:04 PM
👀 💰 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/
🧬🌐 This FSHD Society webpage has information on funding opportunities and grant calls currently available from funders all over the globe... www.fshdsociety.org/grants/
Reposted by Helen Walker
#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
🗣️ Ensure your #PatientVoice is heard! Complete the survey here before it closes on 17 Feb: loom.ly/F45mAwg 📝
#Neuromuscular #NMD #MyotonicDystrophy #DM1 #FSHD #SMA
January 31, 2025 at 2:50 PM
#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
🗣️ Ensure your #PatientVoice is heard! Complete the survey here before it closes on 17 Feb: loom.ly/F45mAwg 📝
#Neuromuscular #NMD #MyotonicDystrophy #DM1 #FSHD #SMA
Reposted by Helen Walker
Zooming in on the ultimate connection! 🔬 💥Feast your eyes on this stunning electron microscopy image of a neuromuscular junction #EMFriday #ElectronMicroscopy
January 10, 2025 at 4:04 PM
Zooming in on the ultimate connection! 🔬 💥Feast your eyes on this stunning electron microscopy image of a neuromuscular junction #EMFriday #ElectronMicroscopy
Reposted by Helen Walker
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
Please follow JWMDRC for news, events and information on #translational #neuromuscular #research
January 30, 2025 at 4:59 PM
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
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...
🍊 🧬 🌍 🇪🇺
🔎 fshd-europe.info/fshd-connect...
🍊 🧬 🌍 🇪🇺
January 30, 2025 at 4:10 PM
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...
🍊 🧬 🌍 🇪🇺
🔎 fshd-europe.info/fshd-connect...
🍊 🧬 🌍 🇪🇺