Pathfinders Neuromuscular Alliance
@pathfindersnma.bsky.social
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
Lauren has SMA type 2 and lives in London with her husband. She has worked in policy and campaigns for the last ten years.
UpLift 𝐀𝐂𝐓𝐈𝐎𝐍 𝖧𝗈𝗂𝗌𝗍𝗌 𝗂𝗇 𝖧𝗈𝗍𝖾𝗅𝗌!🗣️📝
📝 𝐒𝐢𝐠𝐧 𝐔𝐩: https://forms.gle/N4zMuXCmdenUJHKG6
UpLift 𝐀𝐂𝐓𝐈𝐎𝐍 𝖧𝗈𝗂𝗌𝗍𝗌 𝗂𝗇 𝖧𝗈𝗍𝖾𝗅𝗌!🗣️📝
📝 𝐒𝐢𝐠𝐧 𝐔𝐩: https://forms.gle/N4zMuXCmdenUJHKG6
October 9, 2025 at 2:02 PM
Lauren has SMA type 2 and lives in London with her husband. She has worked in policy and campaigns for the last ten years.
UpLift 𝐀𝐂𝐓𝐈𝐎𝐍 𝖧𝗈𝗂𝗌𝗍𝗌 𝗂𝗇 𝖧𝗈𝗍𝖾𝗅𝗌!🗣️📝
📝 𝐒𝐢𝐠𝐧 𝐔𝐩: https://forms.gle/N4zMuXCmdenUJHKG6
UpLift 𝐀𝐂𝐓𝐈𝐎𝐍 𝖧𝗈𝗂𝗌𝗍𝗌 𝗂𝗇 𝖧𝗈𝗍𝖾𝗅𝗌!🗣️📝
📝 𝐒𝐢𝐠𝐧 𝐔𝐩: https://forms.gle/N4zMuXCmdenUJHKG6
The Pathfinders social survey has gone live. Please take a moment to share your experiences of the care packages you receive so that we can shape our campaigning efforts for the upcoming year. https://forms.gle/uN3T9P1TkyVnKrJC9 or click the link in the bio. #SocialCare #CareSurvey #HaveYourSay
October 2, 2025 at 2:02 PM
The Pathfinders social survey has gone live. Please take a moment to share your experiences of the care packages you receive so that we can shape our campaigning efforts for the upcoming year. https://forms.gle/uN3T9P1TkyVnKrJC9 or click the link in the bio. #SocialCare #CareSurvey #HaveYourSay
Check out our latest updates in our October 2025 newsletter!
https://mailchi.mp/pathfindersalliance/pathfinders-october-2025-update
https://mailchi.mp/pathfindersalliance/pathfinders-october-2025-update
October 1, 2025 at 3:01 PM
Check out our latest updates in our October 2025 newsletter!
https://mailchi.mp/pathfindersalliance/pathfinders-october-2025-update
https://mailchi.mp/pathfindersalliance/pathfinders-october-2025-update
This month, we're shining a spotlight on Charcot-Marie-Tooth (CMT) disease - one of the most common inherited neurological conditions, yet surprisingly unknown to many.
Throughout October, we'll be sharing informative posts, stories, and resources to raise awareness about CMT.
Throughout October, we'll be sharing informative posts, stories, and resources to raise awareness about CMT.
October 1, 2025 at 12:30 PM
This month, we're shining a spotlight on Charcot-Marie-Tooth (CMT) disease - one of the most common inherited neurological conditions, yet surprisingly unknown to many.
Throughout October, we'll be sharing informative posts, stories, and resources to raise awareness about CMT.
Throughout October, we'll be sharing informative posts, stories, and resources to raise awareness about CMT.
Sarah Skyrme is a researcher directing an animated film and is looking for brief feedback on it.
It is a 2-minute animation based on interviews Sarah did with boys with Duchenne muscular dystrophy, it depicts a mother and son having a conversation.
You will receive a £25 voucher for taking part.
It is a 2-minute animation based on interviews Sarah did with boys with Duchenne muscular dystrophy, it depicts a mother and son having a conversation.
You will receive a £25 voucher for taking part.
June 16, 2025 at 11:34 AM
Sarah Skyrme is a researcher directing an animated film and is looking for brief feedback on it.
It is a 2-minute animation based on interviews Sarah did with boys with Duchenne muscular dystrophy, it depicts a mother and son having a conversation.
You will receive a £25 voucher for taking part.
It is a 2-minute animation based on interviews Sarah did with boys with Duchenne muscular dystrophy, it depicts a mother and son having a conversation.
You will receive a £25 voucher for taking part.
Reposted by Pathfinders Neuromuscular Alliance
Please take a look and share! 🙌🏽
@pathfindersnma.bsky.social @asthmaandlung.org.uk @mdukcharity.bsky.social @sophphillips32.bsky.social @profkrc.bsky.social @wellcometrust.bsky.social @sfdirewolf.bsky.social @naomijacobs.bsky.social @longcovidadvoc.com
@pathfindersnma.bsky.social @asthmaandlung.org.uk @mdukcharity.bsky.social @sophphillips32.bsky.social @profkrc.bsky.social @wellcometrust.bsky.social @sfdirewolf.bsky.social @naomijacobs.bsky.social @longcovidadvoc.com
We launched our Artist Collaborator search last week!
Take a look here to learn more if you are an artist who lives on or with ventilation & would like to participate in a paid residency 🙌🏽
www.sheffield.ac.uk/cripping-bre...
@kirstyliddiard1.bsky.social
Take a look here to learn more if you are an artist who lives on or with ventilation & would like to participate in a paid residency 🙌🏽
www.sheffield.ac.uk/cripping-bre...
@kirstyliddiard1.bsky.social
June 2, 2025 at 8:17 AM
JOIN OUR TEAM!
We're looking for a skilled communications and engagement professional to enhance our communications, expand our audience, and deepen user interactions across all platforms.
Apply here: www.charityjob.co.uk/jobs/pathfin...
LAST CHANCE! Deadline Wednesday 21st May at 11am
We're looking for a skilled communications and engagement professional to enhance our communications, expand our audience, and deepen user interactions across all platforms.
Apply here: www.charityjob.co.uk/jobs/pathfin...
LAST CHANCE! Deadline Wednesday 21st May at 11am
May 19, 2025 at 1:12 PM
JOIN OUR TEAM!
We're looking for a skilled communications and engagement professional to enhance our communications, expand our audience, and deepen user interactions across all platforms.
Apply here: www.charityjob.co.uk/jobs/pathfin...
LAST CHANCE! Deadline Wednesday 21st May at 11am
We're looking for a skilled communications and engagement professional to enhance our communications, expand our audience, and deepen user interactions across all platforms.
Apply here: www.charityjob.co.uk/jobs/pathfin...
LAST CHANCE! Deadline Wednesday 21st May at 11am
Reposted by Pathfinders Neuromuscular Alliance
Tomorrow is World HMV Day, which supports ventilated people, patients & their families. This year's theme is #HMVCareIsKey
We have a very special blog post out tomorrow troubling the current context of care in relation to HMV written by one of our community researchers👍
@pathfindersnma.bsky.social
We have a very special blog post out tomorrow troubling the current context of care in relation to HMV written by one of our community researchers👍
@pathfindersnma.bsky.social
May 19, 2025 at 8:21 AM
Tomorrow is World HMV Day, which supports ventilated people, patients & their families. This year's theme is #HMVCareIsKey
We have a very special blog post out tomorrow troubling the current context of care in relation to HMV written by one of our community researchers👍
@pathfindersnma.bsky.social
We have a very special blog post out tomorrow troubling the current context of care in relation to HMV written by one of our community researchers👍
@pathfindersnma.bsky.social
WE'RE HIRING
We're looking for an experienced communications and engagement professional to improve our content, reach and user engagement.
Apply here: www.charityjob.co.uk/jobs/pathfin...
#disability #musculardystrophy
We're looking for an experienced communications and engagement professional to improve our content, reach and user engagement.
Apply here: www.charityjob.co.uk/jobs/pathfin...
#disability #musculardystrophy
May 12, 2025 at 11:06 AM
WE'RE HIRING
We're looking for an experienced communications and engagement professional to improve our content, reach and user engagement.
Apply here: www.charityjob.co.uk/jobs/pathfin...
#disability #musculardystrophy
We're looking for an experienced communications and engagement professional to improve our content, reach and user engagement.
Apply here: www.charityjob.co.uk/jobs/pathfin...
#disability #musculardystrophy