iiinova — where your digital self keeps evolving

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 13h

🎃 October’s Monthly Quiz Night – Sign Up Now! Expect mysterious melodies, curious chemistry, and matchday drama creeping in from the 2026 World Cup. 📅 Tuesday 20th Oct ⏰ 7pm 🔗 Sign up: tinyurl.com/PathfindersQuizOct

Pathfinders Neuromuscular Alliance October Quiz Night event on Tuesday 20th October with Halloween-themed icons.

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 08/10/2026

Monthly Quiz Night - Sign up Now! 📅 Tue 20 Oct ⏰ 7pm 🔗 tinyurl.com/PathfindersQuizOct A fast, fun mix of geography, music covers, science, and Powerchair Football - maps, melodies, microscopes, and matchday drama in one quiz.

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 07/10/2026

Dave visited Naidex Roadshow South in Farnborough this September—much bigger and busier than expected! From wheelchairs to assistive tech, there was plenty to see. He’ll be at the main Naidex event in Birmingham next March. Read more: ow.ly/p7CF50ZUnjy

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 05/10/2026

We're seeking paid guest speakers for our videos and PAE sessions! Share your lived experience and help PA employers grow and understand their roles. Sign up for our PAE sessions: ow.ly/JR8I50ZUn3k Apply to be a paid speaker: ow.ly/EAbp50ZUn3l

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 01/10/2026

Our October newsletter is now available to read. Discover quizzes, films, campaigns, and more. What are you most excited about from Pathfinders' this month? Read here: mailchi.mp/pathfindersalliance/octo…

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 29/09/2026

Join us for our Monthly Quiz Night - every 3rd Tuesday! A fun, friendly evening where the Pathfinders community gets together online. This month’s quiz is hosted by Dave, our Equipment Advice & Outreach Officer. 📅 Tue 20 Oct ⏰ 7pm 🔗 tinyurl.com/PathfindersQuizOct

001

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 28/09/2026

“There should be access for all.” But only some disabled travellers can stay in hotel rooms because just 18 hotels in the UK offer ceiling‑track hoists. Many of us are shut out by rooms that hotels claim to be accessible but aren’t for everyone. Don’t Wing it, Sling it!

Smiling woman seated comfortably in a supportive hoist sling, highlighting accessibility and independence.

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 24/09/2026

“The purple pound exists.” Yet with only 18 hotels in the UK offering ceiling‑track hoists, disabled travellers are still being shut out by inaccessible rooms. Our money is as good as anyone else’s — we want to travel too. Don’t Wing it, Sling it! #HoistsInHotels

Smiling man with glasses supported by a purple sling, indoors with blurred background.

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 23/09/2026

Upcoming PAE Sessions Update! 🗓️ Wednesday, 23rd Sept (6:00 PM - 7:00 PM) PAs in Hospitals Campaign & Petition! 🗓️ Wednesday, 30th Sept (6:00 PM - 7:00 PM) How to Organise Care on Holiday Got any questions? Email Charley@pathfindersalliance.org.uk. Hope to see you there!

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 22/09/2026

👋 MEET DAVE! Meet Dave Loveridge, our new Equipment Advice & Outreach Officer! Over the next 18 months, Dave will be listening, learning and connecting with the neuromuscular community to help shape our Equipment Advice Service. 📝 Share your experiences: ow.ly/BnzT50ZQ5VF

010

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 17/09/2026

🏥 PAs in Hospital Campaign Join us for a special online session with guest speaker Sarah Rose on Wednesday 23rd September, from 6–7pm on Zoom. Hear Sarah’s experience and learn more about the importance of Personal Assistants in hospital 💙 Sign up: ow.ly/iHTV50ZOHGN

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 15/09/2026

Quiz Night is TONIGHT! Join us online at 7pm for our Monthly Quiz Night - fun, friendly, and open to everyone. Sign up before we start: 📝 tinyurl.com/PathfindersQuizSept

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 14/09/2026

“I want to travel without worrying how I’ll get into bed.” Only 18 hotels in the UK offer ceiling‑track hoists, most “accessible” rooms still leave some disabled people without safe transfers. A hoist is a reasonable adjustment that can change this. Don’t Wing it, Sling it!

Person using a blue sling lift in a cozy bedroom, sharing a quote about wanting to travel freely without bed transfer concerns.

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 10/09/2026

Our next PAE Session is Wednesday 23rd September, 6pm-7pm. The next session will be an open discussion. Sign up to our sessions: ow.ly/H9CT50ZBo2a #MuscularDystrophy #DisabilitySupport #PAEmployer #PathfindersNMA

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 09/09/2026

Monthly Quiz Night is back! Join us online for our next quiz on 📅 Tues 15 Sept 2026 at 7pm. A fun, friendly way to connect with the Pathfinders community and test your knowledge. Sign up now:📝 tinyurl.com/PathfindersQuizSept

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 08/09/2026

“Freedom to go wherever I want without worrying about how I will transfer.” Disabled people shouldn’t have to manage in hotel rooms not set up for their needs. Hotel building regs don’t require ceiling‑track hoists. Join our campaign - Don’t Wing it, Sling it! #HoistsInHotels

Person in a sling hoist smiling, accompanied by text advocating for ceiling track hoists in hotels to improve travel for disabled guests.

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 07/09/2026

September 7th is #WorldDuchenneAwarenessDay. This year’s theme is access. For people with #DuchenneMuscularDystrophy #DMD, accessible hotels and hoists are vital. Our #HoistinHotels campaign shares lived experiences and calls for real change. Read more: ow.ly/UlUb50ZKk4L

001

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 02/09/2026

“Hotels having ceiling‑track hoists would remove a barrier in travel.” Disabled people shouldn’t have to manage in rooms not set up for their needs. A hoist is a reasonable adjustment many rely on to get into bed. Don’t Wing it, Sling it! #HoistsInHotels

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 01/09/2026

Our September newsletter has arrived! Check your spam folder in case you missed it. Read here: mailchi.mp/pathfindersalliance/sept…

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 31/08/2026

Monthly Quiz Night - every 3rd Tuesday! Join us online for a fun, friendly quiz with the Pathfinders community. 📅 Next quiz: Tues 15 Sept 2026 at 7pm 📝 Sign up: tinyurl.com/PathfindersQuizSept

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 28/08/2026

Help us support people with neuromuscular conditions. Your support helps us continue providing vital services, from research and advocacy to our PAE (Personal Assistant & Employer) sessions. It also helps us run events for our community. Donate here: ow.ly/a2ox50ZFwtn

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 26/08/2026

Our next PAE Session is Wednesday 9th September, 6pm-7pm. The next topic is about Creating a Care Backup Plan. Sign up to our sessions: ow.ly/gOWz50ZBnTb #MuscularDystrophy #DisabilitySupport #PAEmployer #PathfindersNMA

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 21/08/2026

Ready to play, connect and have some fun? 🕹️ Join Pathfinders #Gaming Social on 29th Sept, 7:00pm - 8:30pm! Whether you’re a serious gamer, a casual player, or just fancy meeting other #Pathfinders members, everyone is welcome. Email holly@pathfindersalliance.org.uk to join! 🎮

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 20/08/2026

The UpLift Weekender is a space created by people with lived experience, for young people with muscle‑weakening conditions, where confidence grows and friendships begin. Our funding has ended, we need new partners to continue. 💚 June Weekender Recap 🔗 ow.ly/TlG750ZmhSA

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 19/08/2026

Our next PAE Session is Wednesday 26th August, 6pm-7pm. The next topic will be How to Organise Care on Holiday. Sign up to our sessions: ow.ly/oubG50ZAqX5 #MuscularDystrophy #DisabilitySupport #PAEmployer #PathfindersNMA

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 18/08/2026

🔥 TONIGHT is Quiz Night! It’s happening - 7pm tonight! Fast‑paced fun, friendly competition, big community energy. 🎉 Are you signed up? Lock it in and join us: tinyurl.com/PathfindersQuiz #PathfindersQuizNight #CommunityConnection

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 17/08/2026

Come along to our first community social in London! We will be meeting at the British museum, having some time at the museum and then heading for some drinks. Spaces are limited! Email: Holly@pathfindersalliance.org.uk #PathfindersNMA #CommunitySocial #NeuromuscularCommunity

001

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 14/08/2026

Bobby from Hull & East Yorkshire Powerchair Football Club is back in a Strikeforce chair, using a chin controller! ⚽️ #PowerchairFootball #DisabilitySport #Pathfinders #PathfindersNMA #NeuromuscularConditions

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 13/08/2026

Inclusionairies Lab and Duchenne UK have teamed up and are asking for your input on respiratory care, to identify opportunities to improve future products, services and support. Scan the QR code to complete the form. Email inclusionairieslab@liverpool.ac.uk any queries

Pathfinders Neuromuscular Alliance poster seeking people with neuromuscular conditions to share respiratory equipment experiences via a QR code survey.

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 12/08/2026

Need support navigating disability services? We’re here to help. You don’t have to face these challenges alone. Our team works alongside you to understand what matters to you and help you access the support you need. Contact: holly@pathfindersalliance.org.uk #NeuromuscularConditions #Pathfinders

Information on advocacy support from Pathfinders Neuromuscular Alliance for neuromuscular condition patients with contact email.

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 11/08/2026

🎉 Are You Signed Up? Pathfinders’ Quiz Night is nearly here - Tuesday 18th August at 7 PM. An evening of friendly competition & big community energy. 📅✨ Lock it in your diary and sign up now: tinyurl.com/PathfindersQuiz #PathfindersQuizNight #CommunityConnection

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 10/08/2026

Our next PAE Session is tonight 10th August, 6pm-7pm. The next topic will be what happens and who pays when my PA comes out with me? Email Charley@pathfindersalliance.org.uk if you would like to join a session. #MuscularDystrophy #DisabilitySupport #PAEmployer #PathfindersNMA

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 08/08/2026

Health Minister Mike Nesbitt, MLA, visited the Regional Neuromuscular Service at Thompson House Hospital, Lisburn, to see how the team is transforming lives. He met Pathfinders Research Manager Suzanne and learnt more about specialist care and treatments. #Neuromuscular #PathfindersNMA #Disability

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 06/08/2026

We would like to welcome Dave Loveridge, our new Equipment Advice Officer! Dave will help members talk through practical issues around equipment, adaptations and everyday living, share useful information and resources, and connect people to others with relevant lived experience.

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 05/08/2026

Pathfinders Quiz – Summer Edition ☀️ 📆 Tuesday, 18th August ⏰ 7:00 PM 🎟️ Sign up here: tinyurl.com/PathfindersQuiz Join us for an evening of friendly competition and big community energy. Come for the quiz, stay for the connection! #PathfindersQuizNight #CommunityConnection

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 04/08/2026

The University of Salford is looking for young men living with Duchenne Muscular Dystrophy (DMD) and their carers to take part in a study exploring experiences of counselling. Interested? Email a.iqbal50@edu.salford.ac.uk or scan the QR code. #Duchenne #MuscularDystrophy #DisabilityResearch

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 03/08/2026

Our latest report Bare Minimum Care highlights the challenges people living with neuromuscular conditions face in accessing adequate adult social care. You can find the report here: www.pathfindersalliance.org.uk/camp…

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 31/07/2026

Read our latest Research Unravelled article on the Psychological Burden of Neuromuscular Diseases. Link: www.pathfindersalliance.org.uk/rese…

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 28/07/2026

Join us for our Summer Edition Quiz Night! An evening of fun, friendly competition, and a chance to CONNECT with the Pathfinders community. Everyone is welcome to join! Tuesday 18th August, 7pm 📅 Sign up: tinyurl.com/PathfindersQuiz #PathfindersQuizNight #CommunityConnection

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 27/07/2026

Our next PAE Peer Support Session is on Wednesday 29th July from 6:00pm-7:00pm. What happens if my Personal Assistant is off sick? Join as we discuss how to prepare for unexpected absences, and where you can access support. Sign up: ow.ly/nVSQ50ZrS2I

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 17/07/2026

We’re looking for people 18+ to come along to our social committee meeting and help plan some fun events for the neuromuscular community! Think: day trips, fun nights out, online gaming, catching up with friends! Have any ideas or just want to meet new people? Get in touch on any of our channels.

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 15/07/2026

People with conditions that limit movement such as muscle weakening conditions can be at risk of pressure ulcers. People with long term conditions, carers, PAs and health professionals have developed a new website about pressure ulcer prevention: www.pressureulcer.co.uk.

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 14/07/2026

Cripping Breath are looking for people across the UK who use ventilation to take part in a creative research project involving photographic storytelling. For information watch the video below or contact the project researcher j.e.kettle@sheffield.ac.uk www.youtube.com/watch?v=t0Z7rRI2vaE

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 13/07/2026

New on the Blog: UpLift Weekender 2026 was full of confidence, connection and fun — and with National Lottery funding now ended, we’re launching a fundraising campaign to save the UpLift Weekender so more young people can benefit. Read more: ow.ly/VM9j50ZmhSE

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 10/07/2026

Thanks to everyone who joined our Weekender event in Liverpool! Where should we take it next? Let us know your thoughts below! #WeekenderEvent #weekender #nationallottery #pathfindersnma

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 08/07/2026

Check out our trustee Sarah Rose on the latest episode of the Let's Talk Care Podcast discussing the need to have our own PAs when admitted to hospitals and more. www.facebook.com/share/v/1AEyuKHnM4… #LetsTalkCare #PatientAdvocacy #LetsTalkCarePodcast #NinasLaw

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 06/07/2026

Our chair of trustees Sarah Rose was a guest on the 'Let's Talk Care' podcast with Nina Parry. Listen to it now here: www.facebook.com/share/v/1AEyuKHnM4…

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 06/07/2026

Don't forget our social committee meets tomorrow evening! Sign up if you haven't already and shape our future events! Have any ideas or just want to meet new people? Come along on the 7th of July at 6pm. Email holly@pathfindersalliance.org.uk to get involved

000

Pathfinders Neuromuscular Alliance @pathfindersnma.bsky.social · 02/07/2026

ICYMI: Our July Newsletter is now available to read! ow.ly/Vrjy50Zjxjv If you can't see the recent edition of our newsletter check your spam.

000