FND Together

Hi Lily,
Thank you for this study.
FND Together is located in Canada. Are you looking for participants from the UK only at this time or is this an international study?

“This study provides first evidence of impaired respiratory interoception in patients with functional neurological disorder.”

* assoc w somatoform dissociation
* novel respiratory resistance sensitivity task
* “group difference further remains after controlling for trait anxiety scores”

Link 👇

🧠 Study exploring new FND treatment! We’re exploring patient views on Brain-Computer Interfaces (BCIs) for #FND rehab.

✅ 18+

✅ Diagnosed w/ motor FND (e.g. weakness, tremor)

📝 10-min survey and educational video: qualtrics.kcl.ac.uk/jfe/form/SV_...

📎 Poster below #FNDresearch #BCI

Debugging a Brain An engineer confronts and masters a little-known neurological condition with the aid of analytical and debugging skills honed on the job.

Thank you Jenee Hughes and Hindsight Retro Podcast for spreading awareness about FND - Debugging a Brain open.substack.com/pub/hindsigh...

Alberta, Canada
The Alberta petition to improve care and treatment for #FND patients in the province is below. An important initiative by Esther Peters for Alberta 👏
Please print, sign, and return to Esther. Thank you for you support!!!
➡️ drive.google.com/file/d/18L_n...

The cost of ignoring FND patients is immeasurable—lives lost in silence, potential research halted, and trust in healthcare eroded. It's time for the medical community to step up, listen, and create real pathways to care. #FNDawareness #HealthEquity"

Provider Perspectives of Barriers to Delivering Care for Pediatric Functional Neurological Disorder: A Thematic Analysis Functional Neurological Disorder (FND) is a multi-network brain disorder existing at the intersection of neurology and psychiatry. It often takes sign…

Children/teen with #FND continue facing barriers to care

www.sciencedirect.com/science/arti...

Jen is continuing to recruit Canadian 🇨🇦 FND candidates for her research project until the end of March 2025. See detail below.

I still think, from personal experience w the condition as well as the literature, that FND could offer a lot of insight into how brain function works generally.

New editorial in @PracticalNeurol on the pitfalls of diagnostic signs in FND - a short thread...

pn.bmj.com/content/earl...

🇨🇦Susan Brown’s letter to the Minister of Health of Canada 🇨🇦

Gross delays in access to care with longterm, debilitating consequences for thousands of Canadians. Shine a light on this medical blind spot.
#FND
#FNDawareness
#StopTheHarm
#Health

drive.google.com/file/d/1Kjrp...

Justin Trudeau prorogued parlement in 🇨🇦, delaying our chance to present the #FND petition this winter. Signatures will continue to be collected until the session reopens on March 24th. Let’s keep pushing for support & awareness! Your signature matters⬇️

fndtogether.com/en/petitions/

Clinic-Based Assessment and Treatment Strategies for Functional Neurologic Disorders - Practical Neurology Practical strategies can be used in the clinic for management of functional neurologic disorders.

practicalneurology.com/articles/202...

FND research study-online survey (adults population)
FND patients outside of Ireland can participate

Link : psychologygalway.qualtrics.com/jfe/form/SV_...

All signatures received by year end will be forward to the Minister of Parliament office in early January. We hope it will be presented in the House of Commons (Federal Government) winter of 2025.

Audio of the petition for Canadians impacted by #FND

drive.google.com/file/d/1oadr...

Non partisan FND petition for Canadians 🇨🇦

Due to the ongoing post office strike in Canada, please forward your signatures via private courier (FedEx/UPS) before Dec 31, 2024. Thank you for your support.
Petition

fndtogether.com/en/petitions/

Thank you!

I've put together a starter pack for the FND science community.

Please repost to share the link and do let me know of folks I've missed so I can add them to the group.

Thanks everyone 🙏

🧵 1/

Note….Candidates are required to have “sufficient fluency in French” to participate in this FND trial

clinicaltrials.gov/study/NCT064...