This Year’s 10 Biggest Advances in ALS Research


In 2016, a significant number of ALS research discoveries, advances in clinical trials, collaborations and strategic initiatives all accelerated the pace of discovery in finding treatments and a cure for ALS.

We’ve pulled together what we think are 10 of 2016’s biggest advances in ALS research that gave us, and people living with ALS, hope this year!


The discovery of the NEK-1 gene, now known to be among the most common genes that contribute to the development of ALS, made headlines around the globe. More than 80 researchers in 11 countries conducted this largest-ever study of inherited ALS – read more about how Ice Bucket Challenge donations helped The ALS Association invest in this important work conducted by Project MinE.


The Neurological Clinical Research Institute (NCRI) imaging team at MGH, led by Dr. Nazem Atassi, used PET imaging to successfully scan the first person living with ALS to measure inflammation in the brain, a promising first step in this imaging biomarker study. Since then, many more people have participated in the study.


The U.S. Food and Drug Administration (FDA) accepted, and is currently reviewing, a New Drug Application (NDA) for Edaravone for the treatment of ALS. We’re eagerly anticipating news from the FDA in 2017!


Dr. Aaron Gitler and his researcher colleagues, supported by The ALS Association, identified a new therapeutic target for C9orf72-associated ALS. We interviewed Dr. Gitler on our blog about the therapeutic potential to treat ALS.


Investigators at Cedars-Sinai gained approval from the FDA to test the safety of a combination stem cell-gene therapy in a clinical trial. The ALS Association previously certified Cedars-Sinai as a Treatment Center of Excellence, meeting the Association’s rigorous standards with their comprehensive, collaborative approach to patient care and services.


Brainstorm announces positive results for NurOwn stem cell phase II trial reported in the U.S. and then announces larger phase III trial to begin in 2017.


IBM’s Watson supercomputer discovers 5 new ALS genes. IBM’s collaboration with the Barrow Neurological Institute in Phoenix shows the power of Big Data and the potential for advanced computing to speed up progress toward treatment and a cure.


One of the nation’s largest precision medicine programs began enrolling in October, with 9 centers at universities and hospitals across the United States. The ALS Association committed $3.5 million in Ice Bucket Challenge-raised money to this exciting collaborative effort.


At the International ALS/MND Symposium in Dublin, a leading University of Miami ALS researcher and the pharmaceutical company Orphazyme announced the successful completion of phase II trial of arimoclomol in SOD1 ALS.


Announcements of global collaborations, ALS ONE and NeuroLINCS, supported by millions in funding from The ALS Association. These two initiatives will help generate the data researchers need to continue their important work.

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10 thoughts on “This Year’s 10 Biggest Advances in ALS Research”

  1. My wife passed on Dec. 3, 2016 from “ALS”. My question is why hasn’t anyone considered the possibility of a link between ALS and repeated head trauma? I kept telling the doctors at Mayo and all the places I took her about 3 bad falls she had (all ice related) – each in February 2011, Feb.2012 and Feb.2013, where she was knocked unconscious each time, and she split open nearly the exact same spot on the left upper rear part of her skull. Each time, the ER said she would be fine. (The first time she fell, she had a near death experience where she saw herself looking down on her own body.) Certainly, this must raise some questions about head trauma and a possible relationship between the two? Please investigate this, because she was a survivor, who overcame JRA (onset at age 3), kidney failure (once, and stage 3 patient since), Lupus among other things including heart failure and respiratory failure to name a few. She was doing well, until the 3 years with the 3 falls, hitting the same spot on her head. PLEASE, seriously consider this information. I LOVE HER VERY MUCH STILL. Thank you.


  2. my husband has ALS for 4 years and cannot speak, eat, walk on a vent and trach and it is so sad if theire iis any treatment for him to try sure would be wonderful. His mind is perfect and can still smile and laugh with this awful disease .


  3. All those millions from the Ice Bucket Challenge are in danger of being wasted. The only thing coming out from it all is “stuff that might have a bearing on ALS. It’s a bit like saying “we’ve found that these (Brain Tumour) people suffer bad headaches, so if we can just stop the headaches we can maybe cure the illness.”



    I was diagnosed of ALS (amyotrophic lateral sclerosis) in summer of 2012, my symptoms started out with a “foot drop” on my left foot, from there my left leg lost all muscle tone followed by slurred speech and inability to eat without getting choked, strangled, and coughing. My neurologist prescribed me some medications to help my symptoms but the medications did no good and their side effects were too severe. In 2015 i started on NewLife Herbal Clinic ALS Herbal formula treatment, i read alot of positive reviews on their success rate with the ALS Herbal treatment and i immediately started on the treatment. Just 11 weeks into the ALS Herbal formula treatment I had great improvements with my coordination, speech, breathing and muscle movements. I have basically gone stronger than i’d thought i could ever be again, visit NewLife Herbal Clinic official website www. newlifeherbalclinic. com or email info@ newlifeherbalclinic. com. The fatigue and general muscle weakness had also declined, this treatment is nothing less of a miracle!

    Julianne Regan


  5. The Rilutek (riluzole) did very little to help him. The medical team did even less. His decline was rapid and devastating. The psychological support from the medical center was non-existent and if it were not for totalcureherbsfoundation com and the sensitive cure of their herbal formula he would have been not been alive today,there was significant improvement in the first 4 weeks of usage that gave us hope that he will be alive,His doctor put him on riluzole, letting us know there was no cure until we gave try on total cure herbal supplement that cure him totally form this disease after 15 weeks of his usage.
    There is nothing positive about cure ALS condition except for their herbal treatment . 


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