Research Development team at the Motor Neurone Disease Association of England, Wales & NI. We fund and promote cutting-edge
#MND
research & organise
#alsmndsymp
We are deeply saddened by the news that Doddie Weir has died. Doddie has done so much to help raise awareness, funds and in campaigning for more research into
#MND
. Our thoughts are with his family and friends at this time. 💙💛
Standing ovations for the Lalji award winners for the development of Jacifusen, a gene therapy for FUS-ALS.
We heard from Anna who since receiving Jacifusen has shown improvements in function.
Jacifusion is now undergoing a phase 3 trial to fully test the benefit for FUS-ALS.
📣 Latest news! 📣
Encouraging results from the laboratory have led to a small feasibility trial to test Terazosin in
#MND
/
#ALS
. This is another example of how existing drugs could be repurposed for MND and how valuable every piece of research is in the fight against MND.
Congratulations to MND Association Director of Research Development,
@DrBrianDickie
, who has been awarded an MBE in the New Years Honours list.
Brian has been recognised for ‘services to motor neurone disease research’.
Full story here:
#MND
Thank you from all of us at the
@mndassoc
for attending the 33rd International Symposium on
#ALS
#MND
!
We hope you had a productive Symposium. Hopefully we will see you in person in Basel, next year! 👏
We are extremely proud of the
@mndassoc
Director of Research Development, Dr Brian Dickie, to win the
@ALSMNDAlliance
Humanitarian Award 2018 for his relentless commitment to MND research.
#alssymp
Another potential
#MND
#ALS
treatment passed Phase 1 clinical trial.
Read the blog article by our Head of Research
@nickjamescole
to find out what this really means for the drug
#CuATSM
.
📣 Latest news! 📣
The
@US_FDA
have approved
#Tofersen
for the treatment of
#SOD1
#MND
in the US. This approval is based off data from the Phase 3 VALOR clinical trial.
Mutations in the SOD1 gene account for ~2% of all MND cases.
Find out more ⬇
📣 Latest news! 📣
A new platform to rapidly screen potential
#MND
#ALS
drugs has been announced.
EXPERTS-ALS will identify the most promising treatments to move on to larger clinical trials. 🔬
@mndassoc
is proud to help fund this research.
More info:
It is so important to include people living with
#MND
#ALS
at the International Symposium.
We are thrilled to have 19 Patient Fellows attending
#alsmndsymp
and some of them presented posters!
Learn more from
@RickNelmsZT
below ⬇️
Earlier today we attended the official launch of the UK Motor Neuron Disease Research Institute (
@UKMNDRI
)!
The virtual institute aims to the accelerate the search for effective treatments, and ultimately, a cure for
#MND
.
More info:
The approval of
#Tofersen
in the US showcases the current momentum of
#MND
research globally.
None of this progress is possible without the dedication of researchers and generosity of people living with MND, their families and carers.
Thank you. Together we will beat MND. 💙🧡
📣 Latest news! 📣
The
@US_FDA
have approved
#Tofersen
for the treatment of
#SOD1
#MND
in the US. This approval is based off data from the Phase 3 VALOR clinical trial.
Mutations in the SOD1 gene account for ~2% of all MND cases.
Find out more ⬇
Over the past 3 days over 1600 people from the
#MND
#ALS
community came together to share the most exciting and promising research.
We heard over 100 talks and saw almost 400 posters.
Thank you for participating.
Together we can create a world free of MND. 💚
#alsmndsymp
The first dose of the gene therapy targeting C9orf72
#ALS
#MND
was successfully delivered earlier this week at King’s College Hospital.
Read more about the treatment in an article by
@AhmadAlKhleifat
and
@DrMayl
of
@kingsmnd
.
“20 years ago, I think we were in a fog of uncertainty and we didn’t really have much idea what was going on with
#MND
#ALS
."
“We are in a very different place now.” Prof Kevin Talbot
Your support has helped transform MND research so scientists can develop potential treatments.
We are pleased to announce that the phase 3 clinical trial,
#TUDCA
-ALS, has reached the halfway point in its recruitment! 🙌🎉
Consortium partners, including
@mndassoc
, are committed to ensuring the expected recruitment target is met despite the pandemic:
We want to help give everyone diagnosed with
#MND
#ALS
a chance to take part in research. 🔬
@mndassoc
are developing a network of MND Association Research Nurses to help achieve this.
Find out more ⬇️
📣 Latest news! 📣
@mndassoc
, in partnership with
@mndscotland
, has committed additional funding to the
@mndsmart
clinical trial.
This additional investment will help pave the way for new potential treatments to be added to the trial. 🔬
Read more:
Today is
#GlobalMNDAwarenessDay
! Throughout the day we'll be sharing how
@mndassoc
plays a leading role in the global fight against
#MND
by
#DrivingMNDResearch
.
Keep an eye on our socials all day to find out more about what we do and the research we fund! 🔬🥼
Absolutely amazing to hear
@onein300
chatting to
@AmmarAlChalabi
. So important to talk about the perspectives from people living with MND and include them in the research conversation!
#MNDEncourageUK
.
@mndassoc
funded researchers at
@UCLQSMNDCentre
have been able to bypass damaged motor neurones and improve muscle function in models of
#MND
#ALS
.
@DrBarneyB
and team used replacement motor neurones that can be activated by light. 🔦
Read more:
“One of the early career researchers might just hold the cure in their hands and they just don’t know it yet.”
Did you hear about
#MNDEnCouRageUK
this week but not sure what it is? 👩🔬👨🔬
Watch below to find out why the event is so important in the fight against
#MND
.
Clumps of a protein called TDP-43 are seen in 97% of
#MND
cases.
PhD student Tiziana Ercolani is investigating how TDP-43 is involved in the early events that happen in MND.
Understanding these events could help develop new potential treatments.
More:
What a fantastic first day it has been here at the
@mndassoc
33rd International Symposium on
#ALS
#MND
. We heard exciting
#clinicaltrials
updates, the Stephen Hawking Memorial Lecture and award presentations. Congratulations to all the winners including
@sallylight17
!
Thank you for joining us at the 34th International Symposium on
#ALS
#MND
.
We hope you had a productive Symposium and have lots of new ideas to help move your research forward.
We’ll see you next year in Montreal, Canada! 🇨🇦
#alsmndsymp
The future of motor neurone disease research looks bright ✨
Last week we brought early career researchers, senior researchers and people living with and affected by
#MND
to connect, collaborate and develop skills. 🤝
Hear what attendees thought of the event ⬇
#MNDEnCouRageUK
The development of neurofilament light chain as a biomarker (unique biological signal of
#MND
) just won the Healey Centre Award.
Neurofilament played a big role in the approval of Tofersen for SOD1 MND in the US.
So proud to see
@mndassoc
funded researchers among the team.
#ResearcherSpotlight
💡
@AhmadAlKhleifat
is investigating if AI can be used to help find subgroups of people with
#MND
#ALS
who have similar biological pathways.
This could lead to a more personalised approach to treating the disease.
More info ⬇️
Researchers may not have access to labs/clinics during
#COVID19
isolation but here are some of the ways that they're still fighting
#MND
....
#StayHomeSaveLives
Big congrats to the team developing the Toferson antisense oligo therapy in SOD1
#ALS
/
#MND
winning the first Healey Center International Prize for Innovation in ALS!
@TimMillerNeuro
, Don Cleveland, Richard Smith, Toby Ferguson
@biogen
, Frank Bennett
@ionispharma
👏🏻
#alsmndsymp
As of 31 December 2022, for the first time ever, the
@mndassoc
total research portfolio has topped £20 million! 🎉
Thank you for enabling us to continue to fund cutting-edge research in the fight against
#MND
. 🔬
Read about the research we fund ⬇
The
#MND
#ALS
clinical trial session at
#alsmndsymp
is packed!
In this session we will hear some latest updates from trials running all over the world. 🌎
A recently published review of 15 studies that investigated the effectiveness of
#riluzole
as a treatment for
#MND
in real-time, suggested the drug extends survival for much longer than was proposed in original clinical trials 📈💊
Read more here ⬇️
Good luck to Kev & team on their 7 in 7 in 7 Challenge!
Thanks to Kev, we are supporting 3 projects which are developing new potential treatments for
#MND
#ALS
, with our partners
@lifearc1
.
This research will hopefully take us a step closer to a world free of MND.
#7in7in7
A n d t h e y ‘ r e o f f 🥳
Run one of the 7 in 7 in 7 Challenge is underway. Kev, Chris and David will be running from Leeds to York today.
You can support the team here
Good luck guys 💙
#7in7in7
Welcome back to the International Symposium on
#ALS
/
#MND
!
Whether you are joining in person in Basel, or from wherever you are in the world online, thanks for being with us. 🌍
We are united to create a world free of MND. 💚
#alsmndsymp
That’s a wrap on
#MNDEnCouRageUK
2023!
Thanks so much for all the presenters and the MND community for joining us.
And a big thanks to all the fantastic early career researchers. We are so excited to see where your careers in
#MND
research go in the future! 🔬🥼
Clumps of a protein called TDP-43 are found in 97% of
#MND
cases.
@jennagregory488
found that TDP-43 becomes faulty early in the disease.
She described a new way to identify and measure TDP-43 clumps in cells, which may help us understand why it becomes faulty.
#alsmndsymp
Approved! ✅
The
@US_FDA
has approved
#Tofersen
(Qalsody) for the treatment of
#SOD1
#MND
/
#ALS
in the US.
Wondering what this approval means for the UK? Head over to our blog to get all the details ⬇
Last night at the
#ENCALS2023
poster session, the team caught up with a number of
@mndassoc
funded researchers!
Amazing to see so many of our
#MND
#ALS
researchers presenting their work and making new connections! 👩🔬👨🔬
Here are just a few we caught on camera 📷
Further data was presented for Tofersen (a treatment for SOD1
#ALS
#MND
) at
#alsmndsymp
, including analysis of long-term effects.
Those who received Tofersen early had a reduction in a marker of nerve damage called neurofilament light chain, which stayed reduced for 104 weeks.
It was a privilege to have our Royal Patron, HRH The Princess Royal, attend our inaugural
#MNDEncourageUK
event today. We hope everyone who attended enjoyed the event and came away inspired to continue working hard in all of the different areas of
#MND
research.
We've had a great couple of days at our inaugural
#MNDEncourageUK
event.
Today we welcomed our Royal Patron, HRH The Princess Royal, who gave a speech to, and spoke with, those attending the conference.
We also heard from Lee
@onein300
,
@SallyLight17
and
@DrBrianDickie
🔬
#MND
We are pleased to announce that registration for the Virtual 31st Symposium on
#ALS
/
#MND
is now OPEN!
📅 9-11 December 2020, scheduled around the GMT/EDT working day.
Find out more and register now for £45 ➡️
📣 Latest news! 📣
CNM-Au8, a potential treatment for
#MND
, reduced a marker of nerve damage, called neurofilament light chain, after 24-weeks when compared to placebo.
This indicates a possible reduction in nerve damage and disease progression.
More:
In March we heard from researchers who suggested a nasal spray could be developed to treat
#C9orf72
#MND
/
#FTD
.
In early laboratory work, they found that a small molecule, called a peptide, could prevent the death of nerve cells.
Read more:
#2023wrapped
In
#ALS
levels of Stathmin-2 can be reduced.
Stathmin-2 is vital for neurone repair and development of the axon – which carry electrical signals to the muscle. ⚡
QRL-201 is designed to restore levels and is being tested in a clinical trial.
More info:
Today is
#GlobalMNDAwarenessDay
and we will be acknowledging the work carried out by our researchers & all the support given by the wider
#MND
community. Thank you for everything that you do. Please do share your involvement with us 💙
Find out more 🖥️
Ever wondered what happens behind the scenes of an
#MND
#ALS
clinical trial? 🔬🧪
We chatted with Theresa Chiwera, clinical trials manager at
@KCH_Research
, to find out more about what it takes to set up and run clinical trials.
Read more:
In
#MND
#ALS
cells around motor neurons, called microglia, can become faulty and may contribute to the progression of the disease. 🔬
@Ben_ClarkeUK
presented how he is using models to investigate the behaviour of microglia at
#alsmndsymp
.
Read more ⬇️
After the approval of
#Tofersen
for the treatment of
#SOD1
#MND
in the US and the encouraging results from the MIROCALS clinical trial,
@mndassoc
has launched a taskforce to drive access to new and emerging treatments!
Read more about the Taskforce ⬇
The Motor Neurone Disease Association has convened a taskforce of experts from a range of disciplines to focus on access for people with MND to new and emerging treatments.
“20 years ago I think we were in a fog of uncertainty and we didn’t have much idea what was going on with
#MND
#ALS
. We are in a very different place now.” - Prof Kevin Talbot
Without your support, this fog would not have lifted.
Thank you, together we can beat MND! 🧡💙
Exciting to see the equipment which will be used to measure unique biological signals of
#MND
#ALS
, also known as biomarkers, arriving at
@MNDOxford
! 🧪
This will be used in EXPERTS-ALS - a new platform aiming to rapidly screen new MND/ALS drugs.
Today is
#GlobalMNDAwarenessDay
and we'd like to extend a
#HandOf
thanks to all the volunteers who donate their time to participate in MND research studies and to those that support its vital funding. Also to the researchers who work tirelessly to reach a cure for
#MND
/
#ALS
. 🙌🏼
Some of the research team have just landed in Edinburgh ready for the first day of
#encals
#2022
. Looking forward to hearing all about the latest
#mnd
#als
research. If you see us around make sure to say hi! 👋
A new platform designed to screen potential treatments for
#MND
#ALS
rapidly will identify the most promising treatments to move on to larger trials.🔬
EXPERT-ALS is a flagship programme of the UK MND Research Institute.
Blog:
#GlobalMNDAwarenessDay
Diagnosis of motor neurone disease (
#MND
) is lengthy and involves ruling out other diseases.
Biomarkers, unique biological signals in the body, could help improve diagnosis.
@mndassoc
is funding 11 research grants investigating biomarkers.
More info:
The team is excited to be at
#ENCALS2023
this week!
Events like these bring together the
#MND
#ALS
research community to collaborate, network, and generate new ideas in the fight against MND.
Together, we can make a difference!
“We can be much smarter about the drugs we put into trials.” – Prof Martin Turner
In June EXPERTS-ALS was announced. 🧪🔬
The programme, supported by
@mndassoc
, aims to rapidly screen potential treatments for
#MND
#ALS
.
Learn more ⬇️
#2023wrapped
The first poster session of
#alsmndsymp
has started!
With over 170 posters being presented this evening, there is lots of new
#MND
#ALS
research to hear and discuss!
This year’s poster sessions are sponsored by
@Novartis
.
Members of the research team are attending the official launch of the ✨ new ✨ UK Motor Neuron Disease Research Institute!
The virtual institute aims to the accelerate the search for effective treatments, and ultimately, a cure for
#MND
.
Follow
@UKMNDRI
to stay up to date!
The new UK Motor Neuron Disease Research Institute (UK MND RI) launches today, bringing together a virtual network of MND labs, clinical centres and researchers carrying out world leading research across the UK to accelerate the search for a cure for
#MND
.
Yesterday, Pietro Fratta, from
@UCLIoN
gave his Professorial Inaugural Lecture.
@mndassoc
and
@DrBrianDickie
are really proud of Pietro and the work he does in research, in developing young researchers and in clinical work for people with
#MND
and Kennedy's Disease.
Andrea Malaspina gave a great overview of biomarkers (unique biological markers of
#MND
#ALS
) at
#ENCALS2023
Biomarkers could help improve diagnosis and determine if a potential treatment is effective. 🔬
Your support to
@mndassoc
is helping big step forwards to be made!
News of a phase 3 clinical trial of AMX0035 in Europe with intention to submit a licence application to European Medicines Agency is encouraging for our
#MND
community.
Read more about the drug, results of clinical trials so far and next steps here ⬇️
We’re excited to announce our intention to submit a Marketing Authorization Application (MAA) for AMX0035 for the treatment of
#ALS
to the European Medicines Agency & the start of a Phase 3 trial in Europe & the U.S.
It’s
#ClinicalTrialsDay
! 💊🔬
Thank you to everyone who takes part in
#MND
#ALS
research.
Your generosity and selflessness help researchers develop new potential treatments of MND and takes us another step closer to our vision of a 𝒘𝒐𝒓𝒍𝒅 𝒇𝒓𝒆𝒆 𝒐𝒇 𝑴𝑵𝑫.
We have made the tough decision to cancel this year’s International Symposium on ALS/MND due to uncertainty around the impact of
#COVID19
To ensure global collaboration in research & care continues, we’re now focusing on launching a virtual
#alsmndsymp
👇
Researchers have found that an essential function is faulty in brain immune cells in
#MND
. 🧠
In models in the laboratory, they were able to reduce the harmful effects and increase motor neuron survival using an existing drug. 🔬
Read more on our blog:
Toxic clumps of a protein called TDP-43 are found in 97% of
#MND
#ALS
cases.🔬
Elise Kellett has shown that toxic TDP-43 can stop other proteins from working correctly.
Investigation of the specific pathways affected could lead to new treatments.⬇️
Results from the Healey platform trial have found that Pridopidine was safe and may help to improve speech and respiratory function in some people with
#MND
#ALS
.
These promising signs are being used to plan further testing in a Phase 3 clinical trial.
#alsmndsymp
To create a world free of
#MND
, we first need to find effective treatments. 🔬
To do this, potential treatments need to be tested in clinical trials to show they are safe and beneficial.
Interested in taking part in a trial? Find out what happens below.
#GlobalMNDAwarenessDay
Following the success of last year’s virtual
#alsmndsymp
and the ongoing challenges and uncertainty caused by the pandemic, the
@mndassoc
32nd International Symposium in December 2021 will be held online.🌐
Details coming soon 🔬 We hope you will join us.
That's a wrap on
#ENCALS2023
.
It's been amazing to see the breadth of
#MND
#ALS
research, as well as seeing new connections and collaborations being made which could lead to groundbreaking ideas! 💡
We hope to see you at
#alsmndsymp
later this year! 👋
In between sessions this afternoon we managed to catch
@AmmarAlChalabi
for a quick chat about how the 33rd International Symposium on
#ALS
#MND
is going so far.
#alsmndsymp
🌐
Could
#MND
#ALS
be caused by a virus?
In June we delved deeper into the theory that MND could be caused by the activation of ancient viruses hidden in our DNA. 🧬
Now a clinical trial is investigating if antiretrovirals could treat MND.
Read our blog:
A massive congratulations to the poster prize winners at
#alsmndsymp
!
Poster presentations give early career researchers an opportunity to present their research. 🧑🔬
Very proud to see some
@mndassoc
funded researchers as winners this year!
#alsmndsymp
Happy International Day of Women and Girls in Science! 👩🔬
We are celebrating the talented researchers who play an invaluable role in the fight against
#MND
#ALS
.
Throughout the day we’ll be shining a spotlight on a couple of our researchers. 🔦
#WomeninScience
#WomeninSTEM
Our bodies need energy to survive.
In
#MND
energy production is thought to be reduced in some cells that support neurones.
Ben Hall is researching why this happens. This could lead to the development of targeted therapies. 🔬
Listen below ⬇
#WithoutResearchItsJustGuesswork
The week of the Virtual 32nd International Symposium on ALS/MND has arrived! 🥳
We’ll be live tweeting the Symposium all this week so make sure you are following
#alsmndsymp
for all the latest updates!
We love to see your tweets so please do tag us and use the hashtag! 🙌
We’re counting down to 34th International Symposium on
#ALS
/
#MND
! ⏳
With a jam-packed scheduled, we will be hearing some of the latest and most innovative research.
Get a sneak peek of some of the presentations on our blog 👀⬇
The programme for the 31st International Symposium on ALS/MND is now available to view online! 🌐
Head to 👉 to see what will be discussed at this year's virtual meeting and register for just £45.
#alsmndsymp
It’s the final day of
#alsmndsymp
!
In the last two days we’ve heard over 85 presentations from researchers around the world and there’s still more to come! 🌍
Today we’ll hear more about models used to study
#MND
in the lab and ways to improve clinical trial design. 🔬
Communicating research to non-scientific audiences is a skill every scientist should have. 🗣
#MNDEnCouRageUK
aims to develop the skills of early career
#MND
#ALS
researchers so they can share their research widely.
Find out about the event on our blog:
Our second poster session has begun at
#alsmndsymp
!
Poster sessions are so important for sharing research and networking with others.
We have over 400 posters being presented by researchers across the world! 🌍
This year’s poster sessions are sponsored by
@Novartis
.
What a great debate!
Congratulations to the winners, Professors Orla Hardiman and
@AmmarAlChalabi
who argued for better stratification in order to improve clinical trials in the future in a discussion against Professors Robert Miller and Matthew Kiernan
@JNNP_BMJ
.
#alssymp