New Zealand MND Research Network

We are a not for profit organization that promotes motor neurone disease #research in NZ and facilitates collaboration between #MND researchers

[Richard Cave 🇺🇦 @speedoftrust27]

@limpbroozkit Hello SLTs/SLPs and all interested! We are running a free webinar on Apple free voice banking with a focus on what you should know for your clients, who it is better for and what issues may be. Ask any questions, discuss. All welcome & free fegister here https://t.co/MlF1GpLBEl

[New Zealand MND Research Network @NZMNDResearch]

In this webinar Dr Alan Stanley will outline the principles behind providing the best possible care for people with MND (pwMND), and future treatment avenues. Targeted at MDT members caring for pwMND, but everyone welcome to attend. Register & more info@ https://t.co/EnePKVlDP2

[New Zealand MND Research Network @NZMNDResearch]

@mndanz held a hui at parliament as part of MND action month. Click on the link to listen to the recording https://t.co/ecs2pCLR5b
Topics included lived experience of MND; MND research landscape in NZ; NZ Best Practice Recommendations which can be read https://t.co/un9gJeY4h0

[ALS News Today @alsnewstoday]

The U.S. FDA will hold a public meeting in March for advice regarding approval of the investigational therapy tofersen for the treatment of ALS caused by SOD1 gene mutations. https://t.co/oCXUPhKwBu

#ALS #ALSNewsToday #amyotrophiclateralsclerosis #livingwithALS #ALScommunity

[PACTALS @pactals]

Meet our renowned experts in ALS at PACTALS 2023.

Join us in Kuala Lumpur, Malaysia on 14-16 September 2023.

@AmmarAlChalabi
@MeritCudkowicz
@genge_angela
@nervecentrals
@Seung Hyun Kim
@Gen Sobue

[Dr Ahmad Al-Khleifat @AhmadAlKhleifat]

Pain in #ALS is often not recognized enough. A few years ago, we @kingsmnd @AmmarAlChalabi created leaflets about #pain for people with ALS & for health care professionals used in specialist clinics & @mndassoc. Both leaflets received the endorsement of the Royal College of GP

[MND Research Australia @MND_RIA]

This new technique could provide valuable insights into the MND disease process that we can't obtain currently;
Mature ‘lab grown’ neurons hold promise for ALS and other neurodegenerative diseases
https://t.co/zOylNeWxxd

[MND Research @PremiumXRemark]

🚨 New blog! 🚨

Today's blog delves deeper into whether signs of #MND #ALS can be detected before symptoms appear. Observing changes within the body before symptoms occur could help lead to earlier diagnoses and treatment of the disease.

Read more ⬇

https://t.co/yzZAOVDyQ2

[Dr Ahmad Al-Khleifat @AhmadAlKhleifat]

It's so great to see more researchers utilising King’s #ALS Clinical Staging system in clinical trials. Get in touch if you want to use the system in your research. Also we developed an online staging course part of @TRICALS_cureALS here is the link https://t.co/jDS9G70KhS

[MND Research @PremiumXRemark]

✨ It’s the final day of the 33rd International Symposium on #ALS #MND! ✨

We hope you have had a productive Symposium so far and enjoy the final day. Don’t forget if you missed a session you can watch on-demand until 8 March 2022!
#alsmndsymp🌐

[MND Research @PremiumXRemark]

The #clinicaltrial session happened at #alsmndsymp yesterday. 💊

We know the #MND #ALS community are eager to hear updates from trials, so we have put together an overview of the 4 trials discussed at the session yesterday on our blog.

Read here ⬇

https://t.co/hnr6n9e3gf

[Ruben van Eijk @rpavaneijk]

Open-label extension data of Tofersen #alsmndsymp Most data already available in NEJM paper. Surprising large differences between clinical endpoints (e.g. ALSAQ-5 & EQ5D vs ALSFRS-R), confirming the limitations of using scales like the ALSFRS-R in multidimensional disease?

[New Zealand MND Research Network @NZMNDResearch]

The @NZMNDResearch Summer 2022 Newsletter is available now. Click on the link to read the latest news stories from New Zealand. #mnd #als
https://t.co/5qxCzgI7R3

[MND Research @PremiumXRemark]

Registered for #alsmndsymp? Going to be on the go next week? Make sure you download the FREE Symposium app! 📱 You can watch live sessions, browse the agenda and more all on your iPhone/Android!

App Store 👉https://t.co/wzr8SJ4g02

Google Play 👉
https://t.co/bEjyDZOyn6

[New Zealand MND Research Network @NZMNDResearch]

Check out this ALS TDI article: How to Find, Read, and Understand a Research Paper – Even if You’re not a Scientist https://t.co/EKOQ5m6Rk4

[Chris McDermott @profcjmcdermott]

Come and work with our team at Sheffield aiming to end MND. An exciting tenured Grade 9 senior research fellow linked with NIHR. https://t.co/HHV1a1PUPm

[New Zealand MND Research Network @NZMNDResearch]

Register now to attend this free satellite meeting on 6 Dec. Highlights include recent developments in ALS clinical trials, with specific focus in relation to precision therapy, new trial, diagnostic and functional approaches, as well as trial updates.

[MND Research @PremiumXRemark]

Have you registered for the #alsmndsymp satellite meeting hosted by @wfneurology? The meeting will highlight recent developments in #ALS #MND clinical trials on 6 December at 10am (GMT). 🔬🧪

Register now ⬇

https://t.co/G4woXguBF1

[New Zealand MND Research Network @NZMNDResearch]

Congratulations to @kyrah_thumbadoo, a PhD student studying UBQLN2 neuropathology and X-inactivation in #MND at the University of Auckland 👏

[Victor Dieriks @VDieriks]

Our PhD student @kyrah_thumbadoo was the overall winner today and took home the Hilary Halloway prize at the BIRU annual imaging competition @FMHS_UoA. Job well done!! Proud supervisors: @EmmaLScotter @MDragunow @VDieriks

[New Zealand MND Research Network @NZMNDResearch]

Symposium Blogathon: Focus on... Plenary Speakers (Part 1) https://t.co/idH6T8GrzU