In cool news: Today, Paul was invited by the GBS-CIDP Foundation to attend their annual lobbying event on Capitol Hill to meet with legislators to advocate for people with GBS-CIDP and other disabilities. All expenses paid trip to DC for us (not mine, unfortunately) in May! It'll be hard, but YAY!
April 4, 2026 at 1:11 AM
In cool news: Today, Paul was invited by the GBS-CIDP Foundation to attend their annual lobbying event on Capitol Hill to meet with legislators to advocate for people with GBS-CIDP and other disabilities. All expenses paid trip to DC for us (not mine, unfortunately) in May! It'll be hard, but YAY!
July 8, 2026 at 8:48 PM
CIDP is different. Unlike GBS, CIDP has not been convincingly linked to vaccination in epidemiologic studies. The literature mainly consists of case reports, which don’t establish causation.
February 7, 2026 at 3:46 PM
CIDP is different. Unlike GBS, CIDP has not been convincingly linked to vaccination in epidemiologic studies. The literature mainly consists of case reports, which don’t establish causation.
Today is a #CIDP day. Autoimmune disorders are something that people with #chronicillness live with everyday and usually have more than 1. Today is a #Vyvgart ,but #IVIG is another common therapy. It's amazing what #bloodonation and #plasmadonation can do to help others! 🩸👩🏻⚕️
youtu.be/WJVVYk1sg0I?...
youtu.be/WJVVYk1sg0I?...
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) 101
YouTube video by GBS-CIDP Foundation International
youtu.be
January 30, 2025 at 4:19 PM
Today is a #CIDP day. Autoimmune disorders are something that people with #chronicillness live with everyday and usually have more than 1. Today is a #Vyvgart ,but #IVIG is another common therapy. It's amazing what #bloodonation and #plasmadonation can do to help others! 🩸👩🏻⚕️
youtu.be/WJVVYk1sg0I?...
youtu.be/WJVVYk1sg0I?...
Now I have the chronic form of GBS called CIDP but that is still better than being paralyzed and trying to recover from it during a pandemic. I’m thankful every day.
April 26, 2026 at 7:08 PM
Now I have the chronic form of GBS called CIDP but that is still better than being paralyzed and trying to recover from it during a pandemic. I’m thankful every day.
Trifft für mich heute leider einen Nerv 📌. Erster Verweis zum Psychosomatiker kam von einer Neurologin - jetzt nach fünf Jahren Long Covid die Diagnose schwerer Nervenschäden, vermutlich GBS oder CIDP. Wer weiss, welche Schäden hätten vermieden werden können.
March 28, 2025 at 9:27 AM
Trifft für mich heute leider einen Nerv 📌. Erster Verweis zum Psychosomatiker kam von einer Neurologin - jetzt nach fünf Jahren Long Covid die Diagnose schwerer Nervenschäden, vermutlich GBS oder CIDP. Wer weiss, welche Schäden hätten vermieden werden können.
Hospital parking. Travel. Equipment. Changes around the home.
The extra costs of living with GBS, CIDP, MMN or another Inflammatory Neuropathy can add up. Our Personal Grants may be able to help 🩷
🔗 www.inflammatoryneuropathies.uk/finance
The extra costs of living with GBS, CIDP, MMN or another Inflammatory Neuropathy can add up. Our Personal Grants may be able to help 🩷
🔗 www.inflammatoryneuropathies.uk/finance
September 29, 2026 at 1:18 PM
Hospital parking. Travel. Equipment. Changes around the home.
The extra costs of living with GBS, CIDP, MMN or another Inflammatory Neuropathy can add up. Our Personal Grants may be able to help 🩷
🔗 www.inflammatoryneuropathies.uk/finance
The extra costs of living with GBS, CIDP, MMN or another Inflammatory Neuropathy can add up. Our Personal Grants may be able to help 🩷
🔗 www.inflammatoryneuropathies.uk/finance
Continuing our climb in Celeste to support the GBS CIDP foundation tonight! Come watch me attempt chapter 2 as I heal from Guillain-Barre tonight around 7:30pm EST
p2p.onecause.com/gbs-cidp-diy...
p2p.onecause.com/gbs-cidp-diy...
GBS│CIDP Foundation International DIY Fundraising - TrashPlatter
Join me as I document my healing the best way I know how - gaming. twitch.tv/trashplatter
p2p.onecause.com
May 22, 2025 at 2:47 PM
Continuing our climb in Celeste to support the GBS CIDP foundation tonight! Come watch me attempt chapter 2 as I heal from Guillain-Barre tonight around 7:30pm EST
p2p.onecause.com/gbs-cidp-diy...
p2p.onecause.com/gbs-cidp-diy...
Found this good explainer of my husband's disease online. If you're wondering what's up with us. It's been 3 mos since he was diagnosed, so he's well outside the 4-wk "usually people make progress" time. He's not made much progress at all. youtu.be/4omfTbiB0kk?...
Guillain-Barré Syndrome (GBS) 101
YouTube video by GBS-CIDP Foundation International
youtu.be
December 29, 2024 at 1:11 AM
Found this good explainer of my husband's disease online. If you're wondering what's up with us. It's been 3 mos since he was diagnosed, so he's well outside the 4-wk "usually people make progress" time. He's not made much progress at all. youtu.be/4omfTbiB0kk?...
My friend @trashplatter.bsky.social is continuing their Celeste charity run raising money for GBS/CIDP Foundation. Come hang out and be amazed at the accidental wavedashes launching Madeline into hell 💜
www.twitch.tv/trashplatter
Donate here: p2p.onecause.com/gbs-cidp-diy...
www.twitch.tv/trashplatter
Donate here: p2p.onecause.com/gbs-cidp-diy...
Twitch
Twitch is the world
www.twitch.tv
June 7, 2025 at 1:00 AM
My friend @trashplatter.bsky.social is continuing their Celeste charity run raising money for GBS/CIDP Foundation. Come hang out and be amazed at the accidental wavedashes launching Madeline into hell 💜
www.twitch.tv/trashplatter
Donate here: p2p.onecause.com/gbs-cidp-diy...
www.twitch.tv/trashplatter
Donate here: p2p.onecause.com/gbs-cidp-diy...
Freddie Freeman’s son Max was diagnosed with Guillain-Barré syndrome & Freddie missed games because his son almost died this year. This has been an incredible arc for his family. It’s a very rare & brutal neurological condition and you can donate to people surviving with it here:
Donate
The GBS-CIDP Foundation International depends on generosity of those who donate to operate, allowing us to reach individuals, provide materials, and fund research grants.
www.gbs-cidp.org
October 31, 2024 at 4:24 AM
Freddie Freeman’s son Max was diagnosed with Guillain-Barré syndrome & Freddie missed games because his son almost died this year. This has been an incredible arc for his family. It’s a very rare & brutal neurological condition and you can donate to people surviving with it here:
My husband takes it for his chronic pain from CIDP/GBS. He needs it to just be able to function.
August 7, 2026 at 3:37 PM
My husband takes it for his chronic pain from CIDP/GBS. He needs it to just be able to function.
Today was a rough day at work. But next week, I work 1 day, and then P & I are off to DC, courtesy of the GBS|CIDP Foundation, to advocate on Capitol Hill on behalf of Paul's disease and other folks with disabilities. Very exciting and makes work bullshit feel very small. (but it was a lot, y'all 🫠)
May 9, 2026 at 1:07 AM
Today was a rough day at work. But next week, I work 1 day, and then P & I are off to DC, courtesy of the GBS|CIDP Foundation, to advocate on Capitol Hill on behalf of Paul's disease and other folks with disabilities. Very exciting and makes work bullshit feel very small. (but it was a lot, y'all 🫠)
We’ve got a new Local Get Together starting in Hampshire 🩷
The first one is at Alton Library on Tuesday 13 October at 1pm.
A friendly space for people impacted by GBS, CIDP, MMN and other Inflammatory Neuropathies to meet others who understand.
The first one is at Alton Library on Tuesday 13 October at 1pm.
A friendly space for people impacted by GBS, CIDP, MMN and other Inflammatory Neuropathies to meet others who understand.
October 6, 2026 at 11:55 AM
We’ve got a new Local Get Together starting in Hampshire 🩷
The first one is at Alton Library on Tuesday 13 October at 1pm.
A friendly space for people impacted by GBS, CIDP, MMN and other Inflammatory Neuropathies to meet others who understand.
The first one is at Alton Library on Tuesday 13 October at 1pm.
A friendly space for people impacted by GBS, CIDP, MMN and other Inflammatory Neuropathies to meet others who understand.
Did you know that Guillain-Barré Syndrome was first named and described 110 years ago. So, during GBS and CIDP Awareness Month our friends over in the GBS/CIDP Foundation International are looking to collect and share 110 stories about GBS.
May 13, 2026 at 9:49 AM
Did you know that Guillain-Barré Syndrome was first named and described 110 years ago. So, during GBS and CIDP Awareness Month our friends over in the GBS/CIDP Foundation International are looking to collect and share 110 stories about GBS.
I’m glad Paul’s dx was changed to CIDP & he is back in PT & OT. My dx was changed many times over the yrs: GBS/AIDP to CIDP, back to AIDP, then to GBS/AMSAN. Portugal thinks it’s CIDP since I get sick going too long without an infusion. 🤷🏻♂️
March 7, 2026 at 4:06 PM
I’m glad Paul’s dx was changed to CIDP & he is back in PT & OT. My dx was changed many times over the yrs: GBS/AIDP to CIDP, back to AIDP, then to GBS/AMSAN. Portugal thinks it’s CIDP since I get sick going too long without an infusion. 🤷🏻♂️
Today is #DINday, a day to celebrate the #InflammatoryNeuropathies Community, raise awareness about #GBS, #CIDP, #MMN and other conditions, and a day to support each other. To find out more about what you can do, head over to www.dinday.org
June 11, 2025 at 12:30 PM
Today is #DINday, a day to celebrate the #InflammatoryNeuropathies Community, raise awareness about #GBS, #CIDP, #MMN and other conditions, and a day to support each other. To find out more about what you can do, head over to www.dinday.org
A huge thanks to everyone who joined our #GetTogether in #Edinburgh!
Connecting with others who’ve experienced #GBS, #CIDP, #MMN & other #InflammatoryNeuropathies is both powerful for our community, and incredibly useful to steer our campaigns and work. Thank you ❤️
Connecting with others who’ve experienced #GBS, #CIDP, #MMN & other #InflammatoryNeuropathies is both powerful for our community, and incredibly useful to steer our campaigns and work. Thank you ❤️
May 18, 2025 at 10:38 AM
A huge thanks to everyone who joined our #GetTogether in #Edinburgh!
Connecting with others who’ve experienced #GBS, #CIDP, #MMN & other #InflammatoryNeuropathies is both powerful for our community, and incredibly useful to steer our campaigns and work. Thank you ❤️
Connecting with others who’ve experienced #GBS, #CIDP, #MMN & other #InflammatoryNeuropathies is both powerful for our community, and incredibly useful to steer our campaigns and work. Thank you ❤️
Cranial nerve involvement serves as a diagnostic clue in chronic autoimmune neuropathies, particularly in identifying AN and CIDP. Cranial+ CIDP appears to represent a distinct subset with partial overlap to GBS.
Read now: onlinelibrary.wiley.com/doi/10.1111/...
@ean.org #WileyNeuro
#CIDP
Read now: onlinelibrary.wiley.com/doi/10.1111/...
@ean.org #WileyNeuro
#CIDP
March 14, 2026 at 10:01 AM
Cranial nerve involvement serves as a diagnostic clue in chronic autoimmune neuropathies, particularly in identifying AN and CIDP. Cranial+ CIDP appears to represent a distinct subset with partial overlap to GBS.
Read now: onlinelibrary.wiley.com/doi/10.1111/...
@ean.org #WileyNeuro
#CIDP
Read now: onlinelibrary.wiley.com/doi/10.1111/...
@ean.org #WileyNeuro
#CIDP
Mark your diaries:
🩷Thursday 19th | GBS Online Get Together 2pm
🩷Friday 20th | MMN IN Conversation from 12pm
🩷Tues 24th | MMN Online Get Together from 7pm
🩷Thurs 26th | CIDP Online Get Together from 2pm
Zoom Get Togethers: www.inflammatoryneuropathies.uk/get-togethers
#GBS #CIDP #MMN
🩷Thursday 19th | GBS Online Get Together 2pm
🩷Friday 20th | MMN IN Conversation from 12pm
🩷Tues 24th | MMN Online Get Together from 7pm
🩷Thurs 26th | CIDP Online Get Together from 2pm
Zoom Get Togethers: www.inflammatoryneuropathies.uk/get-togethers
#GBS #CIDP #MMN
February 18, 2026 at 6:05 PM
Mark your diaries:
🩷Thursday 19th | GBS Online Get Together 2pm
🩷Friday 20th | MMN IN Conversation from 12pm
🩷Tues 24th | MMN Online Get Together from 7pm
🩷Thurs 26th | CIDP Online Get Together from 2pm
Zoom Get Togethers: www.inflammatoryneuropathies.uk/get-togethers
#GBS #CIDP #MMN
🩷Thursday 19th | GBS Online Get Together 2pm
🩷Friday 20th | MMN IN Conversation from 12pm
🩷Tues 24th | MMN Online Get Together from 7pm
🩷Thurs 26th | CIDP Online Get Together from 2pm
Zoom Get Togethers: www.inflammatoryneuropathies.uk/get-togethers
#GBS #CIDP #MMN
And they're off! #InflammatoryNeuropathiesUK's Chief Exec, Rich started the 40 mile Grim Reaper Ultra-Marathon at 8am. He's running to raise funds and awareness for #GBS, #CIDP, #MMN and other #InflammatoryNeuropathies.
FB live: fb.watch/zNioiBq2O7/
Support: justgiving.com/page/gain40for40
FB live: fb.watch/zNioiBq2O7/
Support: justgiving.com/page/gain40for40
May 24, 2025 at 9:27 AM
And they're off! #InflammatoryNeuropathiesUK's Chief Exec, Rich started the 40 mile Grim Reaper Ultra-Marathon at 8am. He's running to raise funds and awareness for #GBS, #CIDP, #MMN and other #InflammatoryNeuropathies.
FB live: fb.watch/zNioiBq2O7/
Support: justgiving.com/page/gain40for40
FB live: fb.watch/zNioiBq2O7/
Support: justgiving.com/page/gain40for40
That charity - Inflammatory Neuropathies - does amazing work for us turtles and their families.
More information here
www.inflammatoryneuropathies.uk
More information here
www.inflammatoryneuropathies.uk
HOME | Inflammatory Neuropathies UK
Inflammatory Neuropathies UK is the only charity in the UK and Ireland dedicated to supporting people with GBS (Guillain-Barré syndrome), CIDP, MMN, and over 40 other Inflammatory Neuropathies. We pro...
www.inflammatoryneuropathies.uk
August 7, 2026 at 8:07 AM
That charity - Inflammatory Neuropathies - does amazing work for us turtles and their families.
More information here
www.inflammatoryneuropathies.uk
More information here
www.inflammatoryneuropathies.uk
This month, during #GBS and #CIDP Awareness Month, we are asking you to #ShareandShout about your experience of GBS and CIDP. Put up a post on Social Media and tag us in @InflamNeuroUK, wear your Inflammatory Neuropathies UK T-shirt (you can get one at www.inflammatoryneuropathies.uk/shop) 1/2
May 5, 2026 at 3:24 PM
This month, during #GBS and #CIDP Awareness Month, we are asking you to #ShareandShout about your experience of GBS and CIDP. Put up a post on Social Media and tag us in @InflamNeuroUK, wear your Inflammatory Neuropathies UK T-shirt (you can get one at www.inflammatoryneuropathies.uk/shop) 1/2
Thank you for supporting Awareness Month 🩷
Together we raised awareness, connected communities, and supported people impacted by Inflammatory Neuropathies ⭐
#CIDP #GBS #AwarenessMonth
Together we raised awareness, connected communities, and supported people impacted by Inflammatory Neuropathies ⭐
#CIDP #GBS #AwarenessMonth
June 2, 2026 at 10:30 AM
Thank you for supporting Awareness Month 🩷
Together we raised awareness, connected communities, and supported people impacted by Inflammatory Neuropathies ⭐
#CIDP #GBS #AwarenessMonth
Together we raised awareness, connected communities, and supported people impacted by Inflammatory Neuropathies ⭐
#CIDP #GBS #AwarenessMonth