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The mission of the Northeast ALS Consortium (NEALS) is to rapidly translate
scientific advances into clinical research and new treatments for people
with Amyotrophic Lateral Sclerosis (ALS) and motor neuron disease.

Resources for Patients & Families
New Research Participation Survey for PALS
(September 9. 2014)
Researchers from the University of Michigan and University of Rochester are conducting a survey asking PALS for their perspectives and opinions on research participation.  The aim of the survey is to study how people understand different issues related to research participation such as their understanding of purpose and potential benefits and risks of research.  The long term goal of this project is to improve the informed consent process.

The survey is an online survey and takes about 5-8 minutes to complete.  It involves reading a short description of a hypothetical research study and then answering some questions asking for your opinion.   The survey is funded by a grant from the National Institutes of Health. 

If you are interested in the survey, please contact the researchers at this email address: They can provide further information and a link to the survey if you are interested in participating.

Statement on U.S. BrainStorm Trial
We have had many inquiries regarding the BrainStorm Stem Cell Therapeutics Clinical Trial. BrainStorm is currently conducting a Phase IIa dose-escalating trial at the Hadassah Medical Center in Israel. We are continuing to follow the progress of the study in Israel and will keep the NEALS website current on all new trials and start dates.

Protocol information for the BrainStorm trial can be found on the US Government’s clinical trials website. Please continue to check here for new developments about this trial.

Resources for Researchers
National ALS Registry for ALS Researchers
(June 1, 2014)
If you are an ALS Researcher and would like to use the National ALS Registry to help recruit ALS patients for your study, click here. To see a list of ALS Researchers who are already using the National ALS Registry's research notificaton tool to help recruit patients for their studies, click here.

NEALS Databases
NEALS has six de-identified ALS trial databases available for mining. Collected since the birth of NEALS, these ALS trial databases are a great resource for ALS research. Get the data >>
NEALS Samples
Samples from the NEALS repository are available to researchers for the purpose of furthering the understanding of ALS or motor neuron disease and developing disease biomarkers.
Get the samples>>

News & Events
2015 Annual NEALS Meeting
NEALS MEMBERS: The Annual NEALS Meeting will be held November 4 - November 6 in Clearwater Beach, FL. Please RSVP by October 28 to reserve your spot! View agenda and meeting details here.

Ice Bucket Challenge Benefits ALS Research at Barrow

(August 26, 2015)
Researchers at Barrow Neurological Institute have announced the launch of a novel and potentially breakthrough ALS study that is being funded in part by money raised through the challenge. Read more here.

Divvying Up the Ice-Bucket Dollars: Challenge Speeds Trials, Research
(July 31, 2015)
As donors get wet again, Alzforum asks, how is 2014’s ice bucket challenge money being spent? Read more here.

Steve Gleason Act scores victory for ALS patients on Capitol Hill

(July 15, 2015)
Steve Gleason’s latest remarkable achievement will soon be headed to the desk of President Barack Obama. Read more here.

Ice Bucket Challenge Brings $1.5 Million for ALS Drug Trial
(July 14, 2015)
Cytokinetics Inc. said it received $1.5 million to help finance testing of an experimental drug to improve lung function in patients with the devastating neurodegenerative disorder. Read more here.

The ALS Association Announces $11.6 Million in New Research Grants to Find Treatments and a Cure for ALS
(July 14, 2015)

The research awards announced today include investigator-initiated grants, drug development contracts, Milton Safenowitz Postdoctoral Fellowships and support of the NEALS/TREAT ALS™ Clinical Trials Network. Read more here.

NEALS Members: Call for Abstracts
(July 8, 2015)
We would like to extend an invitation for our members to submit an abstract for consideration for presentation at the 14th Annual NEALS Meeting. All abstracts are due by September 4, 2015. For more details, click here.

New Clinical Pilot Studies Will Use Biomarkers to Speed Therapy Development
(July 1, 2015)
The ALS Association and the ALS Finding a Cure Foundation are pleased to announce $3 million in funding for two new Phase II clinical studies through the ALS Accelerated Therapeutics (ALS ACT) initiative. Read more here.


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