Our “What Do I Do If…?” series is here to help you navigate real-life situations that come with living with a neuromuscular condition ♿ What do I do If... People talk to my carer instead of me? 💬 We want to hear from you: What situations should we cover next? Or how would you handle this one?

Row Row Row for Pathfinders! We're exploring the idea of entering a team in the upcoming Bewl Water Dragon Boat Festival on the 29th of August. We are looking for 12-17 volunteers to join the team, contact [email protected] for more information

NOW ON YOUTUBE 💻 Did you miss our webinar: INFORM Well-being? Here’s a short clip from the event. The full recording is available on our YouTube channel here 🔗: https://ow.ly/QsCp50YGsbi

** Important Update: Drop-In Support Group ** We’ve had to postpone this month's session. We’ll now be meeting on 20th May, 3:00 pm – 4:00 pm. Sign up via the link in our bio Need advice now? Contact [email protected]

Your disability should not cost you your career. The 'Know Your Rights' series empowers people with neuromuscular conditions with clear, practical information about their legal rights in everyday life. Need help? Our Advocacy Service can help! Email: [email protected]

Check out our research team's latest Research Unravelled on Sleep disorders in neuromuscular diseases! Read here: https://ow.ly/K8Tb50YFE3r

Save the Date: May 12th! Join Pathfinders and the NMC for an Adult Independence Information Day! Location: Neuromuscular Centre, Winsford, Cheshire Scan the QR code or tap the link in our bio to secure your spot today. https://www.eventbrite.co.uk/e/1985998798869?aff=oddtdtcreator

NOW ON YOUTUBE 💻 Did you miss our webinar: INFORM Accessible Holidays? Here’s a short clip from the event. The full recording is available on our YouTube channel here🔗: https://youtu.be/ab3MTPUB-3w?si=T17oA7nVq_Y73GK6

This week in the "What Do I Do If...?" series we cover what to do if people ask you weird or personal questions about your condition(s). We want to hear from you. What situations should we cover next? Or how would you handle this one? Comment below your thoughts!

WEEKENDER Liverpool 2026 - CONNECT, INFORM & EMPOWER. 📝 Sign up here: https://forms.gle/TPxTUwM9YK7ntzK6A 📍 NOVOTEL Liverpool 📆 Fri 19th – Sun 21st June 2026 🎉 Fully funded Here's what was said about last year's WEEKENDER! 🗨️

💥 WEEKENDER Liverpool 2026 is back! For young adults aged 18–30 with a muscle‑weakening condition 📆 Friday 19th – Sunday 21st June 2026 📍 NOVOTEL Liverpool 🎉 Fully funded Sign up ➡️ https://forms.gle/TPxTUwM9YK7ntzK6A

April newsletter 2026 has arrived, make sure to check your spam folder in case you miss it! https://ow.ly/ReXa50YBGJu

WEEKENDER Liverpool 2026 is officially ON 🎉 Ages 18–30 with a muscle‑weakening condition — this one’s built for you. 📆 19–21 June 2026 📍 Novotel Liverpool ➡️ Sign up now: https://forms.gle/TPxTUwM9YK7ntzK6A

Sex Matters in DMD Come along to a workshop about sexual health and DMD on Thursday May 14 from 11am 4.30pm at University of East London All travel expenses will be recompensed, and you will get an Amazon voucher. Sign up by scanning the QR code or email [email protected]

Accessible housing is a right not a privilege. The 'Know Your Rights' series empowers people with neuromuscular conditions with clear, practical information about their legal rights in everyday life. Need help? Our Advocacy Service can help! Email: [email protected]

SAVE THE DATE! It’s back💥WEEKENDER Liverpool 2026! 18 - 30 ✅ Muscle-weakening condition ✅ 📆 Fri 19th - Sun 21st June 📍 NOVOTEL Liverpool Just 10 places are available for this fully funded WEEKEND - Fun, Informative & Empowering💥 Details of how to sign up will be out soon 👀

TONIGHT! Checkpoint Gaming Social 🎮 Join us at 6pm for an enjoyable evening of Jackbox Party Pack Games, where the only things you need are a screen and a phone! Spaces are limited, sign up: https://ow.ly/5ann50Yywm3

Checkpoint Gaming Social 🎮 Our Checkpoint Gaming Social is tomorrow Thursday 26th March. Join us on Discord for an evening of laughs and friendly competition in Jackbox Party Pack games! ⏰ 6:00pm - 8:00pm Sign up now: https://ow.ly/tanT50YuE3w

Sex Matters in DMD Come along to a workshop about sexual health and DMD on Thursday May 14 from 11am 4.30pm at University of East London. All travel expenses will be recompensed, and incentive for taking part. Sign up by scanning the QR code or email [email protected]

Checkpoint Gaming Social 🎮 We still have some spaces left at our Checkpoint Gaming Social this Thursday 26th March. Join us on Discord for an evening of laughs and friendly competition in Jackbox Party Pack games! ⏰ 6:00pm - 8:00pm Sign up now: https://ow.ly/tanT50YuE3w

INFORM Well‑being Session Webinar – 25 March, 6pm Join us online for an empowering session on emotional well‑being and self‑advocacy, led by people with lived experience of muscle‑weakening conditions. 📝 Sign up: https://tinyurl.com/INFORMWell-beingF

Looking for a relaxed space to chat, share experiences, and connect with others in the community? Our Pathfinders Drop In is the perfect place. 15th April 2026 https://www.eventbrite.co.uk/e/pathfinders-neuromuscular-alliance-the-drop-in-social-meetup-tickets-1985050571696?aff=oddtdtcreator

Checkpoint Gaming Social 🎮 Join us on Discord for an evening of laughs and friendly competition! 📆 Thurs 26 Mar ⏰ 6:00pm - 8:00pm Sign up now: https://ow.ly/hs5O50YuE3x We'll be playing Jackbox Party Pack games, no gaming experience required, just join with phone or browser.

We're happy to announce that our Social Committee will be meeting for the first time this week, 17th March from 12pm-1pm! The committee will be held online, to plan in-person events for the Pathfinders community. Contact [email protected] if you're interested.

UpLift INFORM Accessible Holidays 🏖️💼 ☀️ Join: 🚢 Jen — A seasoned cruiser. 🚆 Sam — Rail travel across Europe to Germany (with hoist hire). 🚐 Chris — Powerchair Footballer, sharing an accessible road trip to Belgium. 📆 18 March | 18:00 📝 Sign up: https://tinyurl.com/INFORMHolidayst

Accessible toilets should be available to everyone who needs them. The Know Your Rights series empowers people with neuromuscular conditions with clear, practical information on their legal rights in everyday life. Need support? Email: [email protected]

MEET THE SPEAKER 🗣️ UpLift INFORM Accessible Holidays 🏖️💼 ☀️ 🚢Meet Jen. Jen has SMA & her favourite escape is cruising. She’s already been on 9 cruises and is heading on her 10th. She’ll share why cruising is an accessible holiday option. 📝 Sign up: https://tinyurl.com/INFORMHolidayst

MEET THE SPEAKER 🗣️ UpLift INFORM Accessible Holidays 🏖️💼 ☀️ 🚐 Meet Chris. Many know Chris as ‘Chris Gordon the Powerchair Footballer’ — and while the sport is his biggest passion, it’s also opened the door to a love of travel. 📝 Sign up: https://tinyurl.com/INFORMHolidayst

MEET THE SPEAKER 🗣️ UpLift INFORM Accessible Holidays 🏖️💼 ☀️ 🚆 Meet Sam Sam has DMD. He will be sharing his trip to Germany by rail, including how he arranged a hoist for his stay and made the journey work smoothly. 📝 Sign up: https://tinyurl.com/INFORMHolidayst

🌟 Dreaming of an accessible holiday? Join us for an online webinar with real stories & practical tips, from people with and lived experiences of muscle‑weakening conditions who travel confidently & creatively. 📆 18 March | 18:00 📝 Sign up: https://tinyurl.com/INFORMHolidayst

UpLift INFORM Accessible Holidays 🏖️💼 ☀️ ♿ Travel without limits! Join our free online webinar on accessible holidays — from European cruises to train travel to Germany! 📆 18 March | 18:00 📝 Sign up: https://tinyurl.com/INFORMHolidayst

Sex Matters in DMD Come along to a workshop about sexual health and DMD on Thursday May 14 from 11am - 4.30pm at University of East London, All travel expenses will be recompensed, and you will get an Amazon voucher for taking part. Scan the QR code or email [email protected]

🌍 Thinking about an accessible holiday? Join our FREE online event with travellers Jen, Sam & Chris; sharing tips on cruising, train travel, driving & fully accessible stays. UpLift INFORM Accessible Holidays 🏖️💼 ☀️ 📆 18 March | 6pm 📝 Sign up: https://tinyurl.com/INFORMHolidayst

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: [email protected]

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 [email protected].

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