@pathfindersnma
User-led organisation, campaigning for choice, control & quality of life for adults with #MuscularDystrophy and related conditions. We offer peer support & info www.pathfindersalliance.org.uk
A reminder that our next support group meeting is 11th March 3:00pm - 4:00pm.
A monthly meetup for those with muscle weakening conditions to share and discuss.
Sign up on Eventbrite: https://ow.ly/vRN350YrhyN
Young people with muscle‑weakening conditions — we need you! 🫵
Join our Hoists in Hotels: Don’t Wing It, Sling It! filming days.
Liverpool 26 Feb | London 11 Mar | Nottingham 17 Mar (1–5pm)
On or off camera — your voice matters! Sign up: https://forms.gle/JvRWw5GSTzuBPfAx9
We need you! 🫵 Join our Hoists in Hotels campaign — on camera or behind it.
Liverpool 26 Feb | London 11 Mar | Nottingham 17 Mar (all 1–5pm)
Help us highlight why accessible hotel equipment matters. Register: https://forms.gle/JvRWw5GSTzuBPfAx9
Can you help us to improve DXA scanning for full-time wheelchair users with neuromuscular conditions?
Join a 45-60 min online interview to share your thoughts.
Sign up use this link in the bio https://uofg.qualtrics.com/jfe/form/SV_e9ZioHfTJbm6Khg or contact us at: raddxa-study@glasgow.ac.uk
Calling young people with muscle‑weakening conditions!
Join our Hoists in Hotels campaign in London (11 Mar) or Nottingham (17 Mar), 1–5pm.
Your voice can shape more accessible hotel stays. Sign up: https://forms.gle/JvRWw5GSTzuBPfAx9
Calling young people with muscle‑weakening conditions!
Help us film for our Hoists in Hotels campaign in London (11 Mar) or Nottingham (17 Mar), 1–5pm.
Register your interest: https://forms.gle/JvRWw5GSTzuBPfAx9
Today is Rare Disease Day, a day to shine a light on the millions living with conditions that are often invisible and overlooked.
Did you know there are over 6,000 rare diseases affecting 300 million people worldwide?
#RareDiseaseDay #PathfindersAlliance
Discover our bite-sized video series on the PA & Employer Journey, funded by Skills for Care! Watch now on YouTube https://www.youtube.com/playlist?list=PLBo6jUgbi0k0Vgp5iT8HATKBrt4C6oxwH and empower your journey with expert advice and peer support. #SkillsForCare #PAJourney
Why is the disability community so often excluded from conversations about sex? 🍆🍑
Sex Matters in DMD project is teaming up to define and improve sexual health, led by people with DMD, for people with DMD.
If you're interested, please email holly@pathfindersalliance.org.uk.
New episode alert! In episode 10 of our PA & Employer Journey bitesize video series, Janet Hoskin and Saul Catlin discuss the importance of memory memory and cognitive challenges for people with Duchenne Muscular Dystrophy.
Watch now on YouTube! 👉 https://youtu.be/s1eviGqzjpo
New episode alert! In episode 9 of our PA & Employer Journey bitesize video series, Charley Walker, Helen Povey, and Jon Hastie discuss how to plan outings and the ways their PAs support them.
Watch now on YouTube! 👉 https://youtu.be/DqAq3dFJR3I
#MuscularDystrophy #PAJourney
Social Committee Meeting – Have Your Say!
We’re holding our Social Committee meeting on Wednesday 19 March at 12:00pm, and we’d love for you to get involved.
Sign up via the link in the bio or search Pathfinders on Eventbrite
#SocialCommittee #AccessibleEvents
New episode alert! In episode 8 of our PA & Employer Journey bitesize video series, Sarah Rose and Phillipa Groves discuss how they collaborate to manage appointments, emphasising the importance of flexibility and communication.
Watch now on YouTube! 👉 https://youtu.be/fD3ocl-meAk
New episode alert! In episode 7 of our PA & Employer Journey bitesize video series, Jon Hastie shares the impact of Duchenne Muscular Dystrophy, while emphasising that he lives an independent, fulfilling life with support from PAs.
Watch now on YouTube 👉 https://youtu.be/rj9pZsMoZ48
Our new bite-sized video series, "PA and Employer Journey," are now live, covering 10 topics important to PAs and PA employers.
Watch now, share your thoughts in the comments, and help us spread the word by sharing with your network!
#PAJourney #EmployerJourney #SkillsforCare
New episode alert! In episode 5 of our PA & Employer Journey bitesize video series, Charley Walker dives into the importance of communication and apps and "Working Together" with your PA.
Watch now on YouTube and follow us for more! 👉 https://youtu.be/phBhi-d5sCU
Episode 4 of our PA & Employer Journey series has Sarah, Phillipa, and Benjamin discussing the topic of “Training a Routine".
Watch the video here https://youtu.be/IpEHWCSqPzA, and check out the other videos in this series!
#PAJourney #EmployerTips #TrainingRoutine #skillsforcare
New episode alert! In episode 6 of our PA & Employer Journey bitesize video series, Charley Walker and Mia Sparkes dive into what 'Being a PA' is
Watch now on our YouTube channel and follow us for more empowering episodes!
👉 https://youtu.be/kNfwJ7YjqvM
New episode alert! In episode 3 of our PA & Employer Journey bitesize video series, Benjamin James dives into the essentials of 'Supervision and Appraisals.'
Watch now on our YouTube channel and follow us for more empowering episodes!
👉 https://youtu.be/ZhtgDC4KXxU
🚨 TODAY’S THE DAY!
EMPOWER Yourself in 2026 🦸 – with Sam & Alex
https://tinyurl.com/EmpowerTw
See you later!
Episode 2 in the PA and Employer Journey series on Getting the Right Start.
Jamie Hale discusses the importance of a job descriptions and adverts when it comes to recruiting your own PAs, the best place to start and ideal practises
Out now on YouTube: https://youtu.be/XnC5vSp_yJ0
Episode 1 in the PA and Employer Journey series on Being Assertive.
Charley Walker and Jon Hastie gives tips about the importance of Being Assertive with your PA and how it enables them as employers to be clear about their needs.
Out now on YouTube: https://youtu.be/wvp_e9bFsiA
Sam & Alex Bolton are twins from Derby living with Type 2 SMA.
📅 11 Feb | 2–3:30pm | Online
🔗 https://tinyurl.com/EmpowerTw
Ages 18–30 with a muscle-weakening condition — don’t miss it!
EMPOWER Yourself in 2026 🦸
18–30 with a muscle-weakening condition?
Join our 6th EMPOWER session on Wed!
Guests: Sam & Alex, twins from Derby 🎬
📅 Wed 11 Feb | ⏰ 2–3:30pm
💻 Online
🔗 https://tinyurl.com/EmpowerTw
Our next Drop In session is taking place on Tuesday 11 February, 6:00–7:00pm. Join us for an informal, welcoming space to chat, share experiences, and connect with others living with muscle weakening conditions.
Sign up via Eventbrite
Our 6th & final uplifting session — EMPOWER Yourself in 2026 🦸
📅 11 Feb
⏰ 2:00–3:30pm
📍 Online
🔗 https://tinyurl.com/EmpowerTw
EMPOWER Yourself in 2026 🦸
Join our last session in our EMPOWER programme
📅 Wed 11th Feb
⏰ 2:00pm–3:30pm
💻 Online
🔗 Sign up: https://tinyurl.com/EmpowerTw
🚨 TODAY’S THE DAY!
EMPOWER: Taking Care of Yourself ❤️🩹 – with Oliver from HEAR4U Counselling.
https://tinyurl.com/EmpowerTw
Oliver Pool is a UK based psychotherapist and full time wheelchair user.
📅 4 Feb | 2–3:30pm | Online
🔗 https://tinyurl.com/EmpowerTw
Ages 18–30 with a muscle-weakening condition — don’t miss it!
EMPOWER Taking Care of Yourself ❤️🩹
18–30 with a muscle-weakening condition?
Join our 5th EMPOWER session next Wed!
Guest: Oliver — psychotherapist & wheelchair user ✨
📅 Wed 4 Feb | ⏰ 2–3:30pm
💻 Online
🔗 https://tinyurl.com/EmpowerTw
