Hopeful Highlights from the Recent ALS MND Symposium

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Earlier this month, The ALS Association was happy to travel to Dublin to participate in the 27th International Symposium on ALS/MND. The Symposium, the largest ever, brought together top ALS researchers and clinicians from all over the world. People in attendance, including those from The ALS Association, used the hashtag #alssymp during the event. Here are some of our favorites!

The Symposium kicked off in Dublin emphasizing global collaboration.

https://twitter.com/alsassociation/status/806516406175105025

Chancellor Robinson of Trinity College kicked off the 2016 #ALS MND Research Symposium by giving 100K welcomes to Dublin! #alssymp pic.twitter.com/1sxPULiX9x

— The ALS Association (@alsassociation) December 7, 2016

This was a record year - over 600 #ALS abstracts this year at Int’l ALS/MND Research Symposium! #alssymp

— The ALS Association (@alsassociation) December 9, 2016

Drs. Vermeulen and Bedlack joined us for the opening session to give firsthand insight on why studying both ALS environmental risk factors and alternative treatments are so vital to ALS research.

Roel Vermeulen showed data measuring how external environments impact the body's internal environment. So much more to learn! #alssymp #ALS pic.twitter.com/IdS36xNuk8

— The ALS Association (@alsassociation) December 7, 2016

.@alsassociation funded @ALSUntangled Rick Bedlack presented how alternative treatments backed by #ALS research can be beneficial. #alssymp pic.twitter.com/In7BBrwqDS

— The ALS Association (@alsassociation) December 7, 2016

.@ALSUntangled's Rick Bedlack showed that >50% PALS try off-label #ALS Tx's. Be careful about attractive claims without evidence! #alssymp

— The ALS Association (@alsassociation) December 7, 2016

And, learn more about #ALS off-label Tx's and ALS reversals/plateaus here: https://t.co/feroiXIjIa #alssymp

— The ALS Association (@alsassociation) December 7, 2016

Next came the awards ceremony. It's always fun to witness the excitement of researchers receiving such competitive awards!

.@alsassociation congrats to Jamie & Benjamin Heywood - Humanitarian Award winner! "Together we can make a difference" #alssymp pic.twitter.com/eJC5HBLo45

— The ALS Association (@alsassociation) December 7, 2016

2015 winner Terry-Heiman Patterson presented the Forbes Norris Award to Dr. Mamede de Carvalho, from Lisbon, Portugal. Congrats! #alssymp pic.twitter.com/w1EtziDRIJ

— The ALS Association (@alsassociation) December 7, 2016

Dr. Carvalho: "award is good for my PALS. Portugal is a small country. #ALS is not well recognized there. They deserve this prize." #alssymp pic.twitter.com/lWHzl70clu

— The ALS Association (@alsassociation) December 7, 2016

Finally, the 2016 @InstitutoPG Award went to Dr. Edor Kabashi for genetic and modeling work in #ALS #alssymp. Congrats to all the winners! pic.twitter.com/8byMbdoTeQ

— The ALS Association (@alsassociation) December 7, 2016

.@alsassociation congratulates this year's International ALS/MND Symposium #ALS poster winners! Excellent work! #alssymp pic.twitter.com/GSeI99zGqw

— The ALS Association (@alsassociation) December 9, 2016

Some highlights here of progress in basic research within the global ALS community.

.@alsassociation-funded Dr. Hande Ozdinler: "If you can improve upper motor neuron (mn) health, you would improve mn circuitry" #alssymp pic.twitter.com/HP5QR8YWQu

— The ALS Association (@alsassociation) December 8, 2016

At @UMontreal, Dr. J. Alex Parker uses microscopic worms to study #ALS & screen drugs. Pimozide drug found & now in clinical trial #alssymp

— The ALS Association (@alsassociation) December 7, 2016

Dr. Nardo: "modification of immune response in nervous system may be key to slow disease progression in #ALS" in mice. Progress! #alssymp

— The ALS Association (@alsassociation) December 9, 2016

#ALS progress! We can read 12 genomes (DNA codes) per minute and will only get better #alssymp

— The ALS Association (@alsassociation) December 9, 2016

ALS therapeutic drug discovery is on the rise!

.@alsassociation-funded Ashkan Javaherian of @GladstoneInst was happy to report multiple potential new #ALS drug target hits #alssymp pic.twitter.com/yktFNYjt4m

— The ALS Association (@alsassociation) December 8, 2016

Dr. Emily Lowry of @ColumbiaMed successfully screened compounds to decrease #ALS motor neuron toxicity #alssymp pic.twitter.com/V8W8az8nTo

— The ALS Association (@alsassociation) December 8, 2016

York Rudhard (Evotec collab w/ @harvardstemcell) is successfully using iPSC tech to discover #ALS drugs focused on SOD1 mutations #alssymp pic.twitter.com/cLzA14gJMC

— The ALS Association (@alsassociation) December 8, 2016

Dr Brennan @OxfordMedSci spelled out many challenges of #ALS drug discovery, offered relevant solutions to speed discovery progress #alssymp pic.twitter.com/MOf2CSWeAO

— The ALS Association (@alsassociation) December 8, 2016

Drug discovery leads to clinical trials. There are more ongoing ALS clinical trials than ever before!

Dr. Nilo Riva in Italy: Cannabis #ALS phase II study reports safety & outcomes w limits that will be addressed in next bigger trial #alssymp

— The ALS Association (@alsassociation) December 8, 2016

Dr. Shefner's VITALITY ALS trial finished enrollment in August. Anticipated end: Q3 2017. We're looking forward to hearing results! #alssymp pic.twitter.com/YSMfsqzndC

— The ALS Association (@alsassociation) December 9, 2016

Dr. Lange showed data from 1st human trials of pyrimethamine: promising results of SOD1 biomarker for familial #ALS #alssymp pic.twitter.com/TYPwVe5gn0

— The ALS Association (@alsassociation) December 9, 2016

Dr. Barbeito showed Masitinib drug modestly prolonged survival in #ALS SOD1 rats. We look forward to clinical trial results in 2017 #alssymp pic.twitter.com/mrKN3a4nvb

— The ALS Association (@alsassociation) December 9, 2016

.@alsassociation-funded Dr. Appel: T regulatory immune cell therapy “looks like showing some promise” in small, prelim study #alssymp #ALS pic.twitter.com/iq35GmJRII

— The ALS Association (@alsassociation) December 9, 2016

Exciting news announced at #alssymp – proud to have supported this #ALS trial arimoclomol. READ MORE: https://t.co/AH6ygzPwje https://t.co/jt9xCz7CnQ

— The ALS Association (@alsassociation) December 9, 2016

And ALS clinical trial guidelines are being made to streamline the process.

We're happy to see results of Airlie House Clinical Trial Guideline Workshop we helped fund! #alssymp by Dr. Mitsumoto pic.twitter.com/JaPWvXiJQE

— The ALS Association (@alsassociation) December 9, 2016

Dr. Mitsumoto: “hoping #ALS clinical trial guidelines will be published in 2017” #alssymp

— The ALS Association (@alsassociation) December 9, 2016

Biomarker discovery strengthens clinical trials. Advances in imaging and cellular biomarkers were also reported during the Symposium.

Dr. Menke discussed using MRI to study #ALS brain over time, and possibility of using outcomes as potential biomarkers for disease #alssymp

— The ALS Association (@alsassociation) December 8, 2016

We helped fund Dr. Ratai's use of MRI/PET neuroimaging as #ALS biomarkers to measure brain inflammation. Exciting study underway! #alssymp pic.twitter.com/5gG3Chpnw6

— The ALS Association (@alsassociation) December 8, 2016

.@alsassociation is anxiously awaiting mitochondria biomarker data we funded in #ALS rasagiline clinical trial coming out soon #alssymp pic.twitter.com/0CfwDqScg2

— The ALS Association (@alsassociation) December 9, 2016

It was the biggest clinical care track in the Symposium’s history. Improving ALS care for people living with their disease and their loved ones is paramount!

From improving how people living with ALS eat…

.@alsassociation funded Dr. Plowman: "Some people eat to live, others live to eat" #ALS impacts both, for health and pleasure #alssymp pic.twitter.com/Y1BjhtzdZO

— The ALS Association (@alsassociation) December 8, 2016

Dr. Plowman showed how & why people with #ALS struggle with swallowing, & offered solutions to help improve https://t.co/WtPHRe7mAy #alssymp

— The ALS Association (@alsassociation) December 8, 2016

To helping caregivers...

Dr. Burke reports on well-being #ALS CALS - show depression & anxiety are the main drivers of burden. Early ID of CALS needs help. #alssymp pic.twitter.com/nd1vzjyki7

— The ALS Association (@alsassociation) December 7, 2016

To better understanding cognitive and behavioral changes…

Dr. Pender (Dublin) shows optimism that new measures of cognition/behavior being developed to help put #ALS interventions in place. #alssymp pic.twitter.com/c8SAwnKqJ7

— The ALS Association (@alsassociation) December 7, 2016

Dr. Crockford (London) shows cognitive & behavioral assess should occur early stage in #ALS disease, concluded from 161 px study #alssymp pic.twitter.com/N0n8cdqwes

— The ALS Association (@alsassociation) December 7, 2016

To improving patient care…

.@alsassociation-funded Zach Simmons shared PALS Tx preference assess. Experimental research must request info both early & late. #alssymp pic.twitter.com/hqmI7imUrU

— The ALS Association (@alsassociation) December 7, 2016

Dr. Martin of @kingsmnd Motor Neuron Clinic showed more integrated care improves PALS survival & improves comm's w/ doctors #alssymp pic.twitter.com/w0d4HpUhkK

— The ALS Association (@alsassociation) December 7, 2016

Dr. Francesco Pagnini presented that meditation training could possibly improve quality of life of people living with #ALS #alssymp

— The ALS Association (@alsassociation) December 8, 2016\

van Groenestijn showed aerobic exercise therapy is most feasible & could be beneficial soon after #ALS Dx for ambulatory people #alssymp

— The ALS Association (@alsassociation) December 8, 2016

.@DrEstherHobson said multidisciplinary care centers show the value of information at #alssymp

— The ALS Association (@alsassociation) December 8, 2016

"Without coming to the #ALS clinic, you are left in the dark." @DrEstherHobson uses telehealth to improve care. #alssymp

— The ALS Association (@alsassociation) December 8, 2016

Global collaboration is key to advancing research towards effective ALS treatments and cures. The collaborative vibe at the conference was infectious! A video from our Chief Scientist, Dr. Lucie Bruijn:

Lucie Bruijn, Chief Scientist @ALSAssociation, discusses the collaboration at our Symposium & how it is vital for #MND research ? #alssymp pic.twitter.com/DGpQ0pUVwo

— MND Association (@mndassoc) December 8, 2016

Talking to one another, sharing ideas and befriending our peers can result in innovation.

.@patientslikeme is trying to help PALS connect with each other. The more friends you make with #ALS, the more you learn. #alssymp

— The ALS Association (@alsassociation) December 8, 2016

Paul Wicks @patientslikeme “offering #ALS data today to get you thinking, get in touch and give us ideas” Collaboration for ideas! #alssymp

— The ALS Association (@alsassociation) December 8, 2016

Collaboration results in gene discovery! Example: Project MinE

Project MinE: "important to explore more rare gene variants." Effort discovered new #ALS risk gene C21orf2 #alssymp https://t.co/7Q3Y7qbiNm pic.twitter.com/RfIK1aZ7T8

— The ALS Association (@alsassociation) December 8, 2016

With advances in genomic sequencing (i.e. reading a person’s full DNA code), there's been huge steps forward in precision medicine to cater drug development and therapy to each individual person living with ALS.

Dr. Hyde (UK) reports, "Genomic data is complex – no one person can analyze. We need to share & collaborate" #alssymp #ALS

— The ALS Association (@alsassociation) December 9, 2016

Dr. Adriano Chio: “For precision medicine, we need to see the full picture of #ALS disease. Challenge is big data” #alssymp pic.twitter.com/IFpaWH4tOe

— The  ALS Association (@alsassociation) December 9, 2016

Dr. Chio said, “Go and collaborate” to be most productive! #alssymp

— The ALS Association (@alsassociation) December 9, 2016

Dr. Brian Dickie, Director of Research of the MND Association wraps up the Symposium.

That's it for another year, our 27th Symposium is over. Here's @DrBrianDickie with his final thoughts on how the #alssymp went ? #MND #ALS pic.twitter.com/oMMgIcHKPY

— MND Association (@mndassoc) December 9, 2016

We look forward to the 2017 Symposium in Boston hosted by ALS TDI and ALS Hope Foundation!

Steve Perrin @ALSTDI & ALS Hope Found invited us to Boston for the 2017 Int’l ALS/MND Research Symposium. Excited for next year! #alssymp pic.twitter.com/mcsRLhoj7h

— The ALS Association (@alsassociation) December 9, 2016

Looking forward to seeing the progress made in a year! Intl Symp in Boston 2017 w/ cohosts @ALSTDI & @ALSHF #alssymp #ALS #MND pic.twitter.com/YolT90Btr8

— ALS Hope Foundation (@ALSHF) December 9, 2016

Thank you for a wonderful time in Dublin!

We were honored to join top #ALS researchers & clinicians in Dublin. Enthusiasm! Creativity! Innovation! Till 2017 in Boston #alssymp

— The ALS Association (@alsassociation) December 9, 2016

THANK YOU to @mndassociation for hosting this year's Int'l Symposium - a wonderful meeting filled with exceptional collaboration! #alssymp

— The ALS Association (@alsassociation) December 9, 2016

Thx for following our #alyssmp tweets from Dublin this week - we're energized & hopeful after hearing about so much emerging #ALS research!

— The ALS Association (@alsassociation) December 9, 2016

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