The SWNODN brings together patients and professionals in the South West of England to improve healthcare outcomes in neuromuscular conditions.
South West, England
Joined July 2016
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SW Neuromuscular ODN retweeted
PA EMPLOYER TRAINING - COMPLETE COURSE 2
Join us on Friday 26th January at 5pm for an introduction session to learn about being a PA Employer.
Details to sign up are below, hope to see you there!
📆 Friday 26th Jan 2024
⌚ 5pm - 6pm
📝 Sign up - ow.ly/BSn050Qt5kv
SW Neuromuscular ODN retweeted
Only one week until the 9th annual LGMD Awareness Day will be celebrated worldwide on September 30, 2023.
Are you ready? 💚 Learn more at LGMD-Info.org
#LgmdDay2023
#TogetherWeAreStronger
#LimeGreen4LGMD
#LGMDawareness
SW Neuromuscular ODN retweeted
Can swallowing exercises work for people living with oculopharyngeal muscular dystrophy (OPMD)?
Speech & language therapist Jodi Allen talks about weighing up the pros and cons.
#OPMD #OculopharyngealMuscularDystrophy #OPMDAwareness #OPMDAwarenessDaySept23
SW Neuromuscular ODN retweeted
UpLift INFORM PA Recruitment
MEET THE SPEAKER - Ross
📆 Mon 16th Oct
⌚ 18:00 - 19:00
📍 Online Webinar
💷 FREE
📝 uplift-inform-parecruitment.…
SW Neuromuscular ODN retweeted
This mitochondrial disease awareness week’s theme is fatigue. Our handbook is here to help you understand and manage your symptoms, offer information, identify potential triggers, and provide management techniques. #WorldMitoWeek @MitoAware shorturl.at/HLYZ1
SW Neuromuscular ODN retweeted
On #NationalFitnessDay why not join WheelPower for an hour of Yoga this morning from 11am, LIVE and for FREE on Zoom 🙏 Join the Movement by booking yourself a ticket before we get underway later this morning wheelpower.org.uk/activities… #FitnessDay #FitnessForAll #DisabilityFitness
SW Neuromuscular ODN retweeted
UpLift EMPOWER Music
@asksupermann produces rock and hip-hop beats under the name of Supermann on da Beat.
Alex is a singer and guitarist in the world’s first Duchenne-fronted alternative rock band, Alex James.
Both live with DMD
Sign Up here: UpLiftEMPOWER.eventbrite.co.…
SW Neuromuscular ODN retweeted
Like to know more about Duchenne muscular dystrophy (DMD) and meet other people in the community?
Come to our New Horizons conference in March.
It’s for family/caregivers, and those working to help people with DMD.
You can pre-register here 👇
duchenneuk.org/our-new-horiz…
SW Neuromuscular ODN retweeted
Upcoming BMS events (register now):
👉11th Sept: BMS Muscle Teaching Day (Adult Muscle) bit.ly/3XorVfp
👉11th and 12th Sept: BMS Annual Meeting bit.ly/44emVft
👉14th Nov: BMS Muscle MRI Workshop bit.ly/3NJIy1X
👉Coming soon: BMS AHP Teaching Day
SW Neuromuscular ODN retweeted
#cmtawarenessmonth
CMTUK brings together young people through CMT Kids who all share a very significant part of their lives – having CMT. But we don’t let this stop us!
If you would like to find out more and how to get involved, please phone CMTUK’s office: 0300 323 6316
#cmt
SW Neuromuscular ODN retweeted
In part 1 of the latest Living With SMA #podcast episode, @rosslannon chats to Mia and Steven who share their personal experiences about needing to be assertive, higher education and the university experience. Listen here: bit.ly/3ecddpG 🎧
SW Neuromuscular ODN retweeted
There are over 100 types of #CMT, making it a complex condition.
Everyone experiences CMT differently.
As part of CMT Awareness Month, we wanted to highlight this, so we asked our members which CMT symptoms they are MOST aware of.
#CMTawarenessmonth #charcotmarietooth
SW Neuromuscular ODN retweeted
Find gentle ways to fill up your cup - walk, relax, journal, sleep 😴
Image: instagram.com/laurajaneillus…
SW Neuromuscular ODN retweeted
Join us! Pathfinders are recruiting academic writers with various levels of experience.
Writing will take place from September through to January. If you have a Neuromuscular Condition and are interested in helping, get in touch with [email protected]!
SW Neuromuscular ODN retweeted
Sylvia needed a tray fitted to her wheelchair which was both secure enough for her to carry items, but also easy for her to remove and place back on as she lives alone.
She can now move around her property with the table in place, remove it and place it back on independently.
SW Neuromuscular ODN retweeted
In the month of October UpLift is running their Dating, Relationships & Having a Family event in London.
Come join on the 14th October at 12pm to learn more from people with muscle weakening conditions about their lived experience and ask any questions you may have!
SW Neuromuscular ODN retweeted
Part 1, episode 20 of our Living With SMA #podcast - Disability & Education - is out today! 🎙️ In this episode, Ross talks with twins Sam & Alex about their educational journey, starting with primary school. Listen or watch here: bit.ly/3LxqxkG
SW Neuromuscular ODN retweeted
💬 "I used to get the highest rate of support. But when it changed over to Personal Independence Payments (PIP), I got everything taken off me." Bernard shares his experiences about how the team helped him to reapply and regain financial support. bit.ly/3SgrOP8
SW Neuromuscular ODN retweeted
The UK Myotonic Dystrophy Patient Registry have created a short survey to understand experiences of, and barriers to registry participation. If you have Myotonic Dystrophy, or care for someone who does, please fill in the short survey about your experiences below.
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SW Neuromuscular ODN retweeted
We know that healthcare can be confusing. That's why our advice and information breaks down what you can expect from NHS and social care services. Make sure to follow us to stay up-to-date with our latest advice articles: bit.ly/3zCJGMq
#NHS #SocialCare
ALT Text reads "Our advice is independent and jargon-free." On the right hand side there is an image of a women wearing a doctors coat. She is wearing a stethoscope and holding a clipboard.