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The mission of 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
Seeking Nominations for the 2014 Fall CRLI
The Northeast ALS Consortium (NEALS) is seeking nominations for this year’s fall ALS Clinical Research Learning Institute (CRLI). For more information and to access the nomination form, click here>>

Statement on Future 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 working with BrainStorm on a planned Phase II study in the U.S. and hope to begin the trial this year. 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 and eligibility criteria for the BrainStorm trial have been posted on the US Government’s clinical trials website. Please note, however, that the study has not yet been approved by the FDA, and recruitment has not started. Please continue to check here for new developments about this trial.

ALS Association/NEALS Webinar: Biomarkers in ALS
(April 7, 2014) Nazem Atassi, MD, MMSc and James Berry, MD, MPH, (Massachusetts General Hospital, Harvard Medical School) discussed the importance of biomarkers research in studying ALS.
Drs. Atassi and Berry highlighted ongoing imaging and biofluid studies in ALS, including the Positron Emission Tomography (PET/MRI) and Longitudinal Biomarkers Studies. Both studies are currently active and looking for new participants. The PET/MRI studies are enrolling at Massachusetts General Hospital in Boston, and the Longitudinal Biomarkers Study is enrolling at institutions in Arizona, Florida, Georgia, Massachusetts, and Pennsylvania. The full webinar, including question and answer session can be viewed here>>

ALS Association/NEALS Webinar: Trial of Resistance and
Endurance Exercise in
Amyotrophic Lateral Sclerosis

(April 8, 2014) During this webinar, Dr. Nicholas Maragakis, MD (Johns Hopkins University) discussed the rationale behind this clinical study and explained how it will help to develop a larger national study designed to understand how exercise can be combined with other treatments to potentially improve strength and alter the course of ALS. The full webinar, including question and answer session can be viewed here>>  

ALS Research Pipeline Webinar Q&A: Part II
(February 17, 2014) Participation in our recent NEALS Webinar on the state of current ALS research was quite high, and we thank everyone who joined the session! Due to time constraints, however, Dr. Jeremy Shefner (the presenter) was unable to respond to all of the inquiries that were submitted during the webinar. Read answers to the rest of the questions we received here>>
PALS in MA, NH, VT and ME: Questionnaire for Environmental Exposures, Toxins and Neurological Disease
(January 13, 2014) Dartmouth-Hitchcock Medical Center in Lebanon, NH, is conducting research to identify factors affecting neurological health. Led by Dr. Elijah Stommel, the study team has created a survey and is asking for volunteer PALS in MA, NH, VT and ME to provide information to help them learn more about how environmental exposures could be related to ALS. Take the survey>>

Resources for Researchers
Helpful Information About the National ALS Registry for ALS Researchers
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 Members Attend the American Academy of Neurology Annual Meeting in Philadelphia

The 66th American Academy of Neurology Annual Meeting was held April 26th-May 3rd at the Pennsylvania Convention Center in Philadelphia, PA. NEALS was well represented at the 2014 AAN, and held a lunchtime satellite meeting on Tuesday, April 29th. Read more>>

New Clinical Scientist Program at Packard/Hopkins for ALS Researchers
The Johns Hopkins Brain Science Institute and Robert Packard Center for ALS Research are pleased to announce a new clinical scientist program: The Translational Clinician Scientist Program and Award.
This multi-year Training and Research program provides a unique opportunity for a Johns Hopkins University, board certified or board eligible, physician scientist trained in Neurology and Neuromuscular Disease to spend a period of up to two years working with the Brain Science Institute (BSi) Neurotranslational Program in Baltimore, Maryland and performing clinical activities at the Johns Hopkins Hospital in Baltimore.  The clinician scientist will have an opportunity to work on their own ALS–relevant project (e.g. biomarkers, drug discovery, Phase 1 trials, Molecular ALS subgroups) and as a member of the BSi Neurotranslational Drug Discovery Team that effectively bridges the Pre-Clinical Science and Clinical Translational teams.
For more information, click here

New Funding Opportunities for the
The Fiscal Year 14 Defense Appropriations Act has announced that funding has been released from the Amyotrophic Lateral Sclerosis Research Program (ALSRP).  The ALSRP is currently accepting applications for two award mechanisms: a Therapeutic Development Award and Therapeutic Idea Award.  Full details for submission can be found here: We encourage NEALS members to submit!  The Pre-Application due date is May 13th, 2014. The Full Application is due on August 20th, 2014.

NEALS/MGH NCRI Team Publish Article in The Lancet
(February 28, 2014) Congratulations to Drs. Anne-Marie Wills and Merit Cudkowicz, and NEALS' Hong Yu, Daniela Grasso and Katy Mahoney for publishing “Hypercaloric enteral nutrition in patients with amyotrophic lateral sclerosis: a randomised, double-blind, placebo-controlled phase 2 trial” online today in The Lancet. In brief, ALS patients with feeding tubes were randomized to replacement calories versus a hypercaloric diet, with or without modified fat content, and followed for five months. The participants who received a high-carbohydrate hypercaloric diet lived longer with fewer adverse events than participants who received the control diet. While the small size of the trial indicates the results need to be interpreted with caution, the authors are optimistic that improved nutrition could make a significant difference for patients with ALS. Read more here>>.

New Article Published: Opportunities for Improving Therapy Development in ALS
(January 29, 2014) In an article published in the journal Amyotrophic Lateral Sclerosis and Frontotemporal Dementia, Lucie Bruijn, PhD, Chief Scientist at The ALS Association, and Merit Cudkowicz, MD, Chief of Neurology at Massachusetts General Hospital, present an overview of issues and recommendations arising from a 2013 roundtable discussion of ways to improve therapy development in ALS. Read more>>

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>>

Prize4Life and Knopp Announce Donation of Empower Phase 3 Data to PRO-ACT Database
Data from one of the largest clinical trials ever conducted in ALS to be part of PRO-ACT database.
Read the Press Release>>
News & Events
Dr. Cudkowicz Appears on ALS Crowd Radio
NEALS co-chair Merit Cudkowicz, MD, MSc appeared on the first installment of ALS Crowd radio to talk about the latest in ALS therapy and innovation. You can listen to the segment with Dr. Cudkowicz here.

The ALS crowd radio series was created to connect ALS patients with the research community, and to educate them on making informed decisions about the care they receive. To read more about ALS Crowd radio and its goals, click here

2014 ALS Association Advocacy Day Highlights
This years ALSA Advocacy Day and Public Policy Conference took place in Washington, DC from May 7 to May 9. A number of NEALS members spoke at the conference, and attended the ALSA Expo on the last day. Highlights from the event can be found here.

2014 Regional CRLI Highlights
The second annual Philadelphia Clinical Research Learning Institute was held May 2nd through the 4th in Philadelphia, PA. Meeting highlights, as well as faculty reactions from this event can now be viewed here.

Manuscript of Completed Clinical Trial now Available Online
The First Time in Human Study of the drug GSK1223249 in ALS has been completed, and the results are now available online. You can view the manuscript here.

First ALS Research Group Meeting to occur this September in Minneapolis
The first ALS Research Group Meeting will take place this September 17-20, 2014 in Minneapolis, MN. Meeting and program information, as well as registration information can be found here.

Announcing the Pooled
Resources Open Access ALS
Clinical Trial (PRO-ACT) Database

It has been announced that the largest ALS clinical trial data base, PRO-ACT, is now openly available to research around the world. The PRO-ACT dataset contains data from subjects from 18 Phase II and III clinical trials in ALS, the largest longitudinal record on people with ALS. The dataset includes ALSFRS/R records, Vital Signs records, FVC and SVC records, and laboratory results. Data mining of PRO-ACT is expected to lead to the identification of disease biomarkers, and provide insight into the design and interpretation of clinical trials. You can view the full article here.

Co-Founder and Former Co-Chair of NEALS receives Sheila Essey Award for ALS Research at 2014 AAN Meeting
This year’s recipient of the Sheila Essey Award for ALS Research is Jeremy Shefner, M.D., Ph.D. of Suny Upstate Medical University. Dr. Shefner has served as a principal investigator for numerous ALS trials, and his leadership in clinical research has been instrumental in accelerating the pace and improving the quality of clinical trials for the disease. He has also been instrumental in developing outcome measures to improve the ability to develop treatments for people with ALS. Shefner served as a co-chair to the Northeast ALS Consortium for 18 years.
“I am greatly honored to be this year’s Sheila Essey award recipient and appreciate the roles that Mr. Essey, the AAN, and The ALS Association have played in supporting ALS research," said Dr. Shefner. “The ALS Association has been an active partner in promoting clinical research in ALS and has funded much of the work that has led to my receiving this award.”

Click here to view the full article.

Cytokinetics, Inc.  Announces Results from Benefit-ALS
Results from the study BENEFIT-ALS were presented at the 66th AAN Meeting in Philadelphia, PA on April 29, 2014. More information can be viewed here.

Recent Discovery Helps to
Identify Common Problems in ALS

Harvard stem cell scientists have discovered that retigabine has effects in preclinical models of motor neuron disorder. The researchers are collaborating with Massachusetts General Hospital and the Northeast ALS Consortium to design an initial clinical trial in ALS. Click here for the full article.

2014 Annual NEALS Meeting Oct. 22 - 24th
The 13th Annual Meeting will take place in late October at the Sandpearl Resort in Clearwater Beach, Florida. NEALS members will begin to receive communication about registration, accommodations and abstract submission shortly.


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