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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
ALS Association/NEALS Webinar: Biomarkers in ALS
Monday, April 7 at 2:00pm
Nazem Atassi, MD, MMSc and James Berry, MD, MPH, (Massachusetts General Hospital, Harvard Medical School) will discuss the importance of biomarkers research in studying ALS.
 
Drs. Atassi and Berry will highlight 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.
 
A question-and-answer session will follow the presentation. To register, click here>>.



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

Tuesday, April 8 at 1:00pm

The first questions asked by patients with a new diagnosis of Amyotrophic Lateral Sclerosis (ALS) often include: "Does exercise help slow the progression of the disease?", "Is there any harm in exercising?", and "What type of exercise (endurance or resistance) is most appropriate?" 
 
In this study, participants with ALS are asked to exercise in one of three ways: weightlifting, stationary bicycling, and range of motion exercise. The investigators test to determine whether one type of exercise is tolerated better and is safer than another, and collect information about how the body responds to exercise in ALS. 
 
During the webinar, Dr. Nicholas Maragakis (Johns Hopkins University) will discuss the rationale behind this clinical study and explain 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. A question-and-answer period will follow. 
 
Please join us for this informative program. To reserve your space, please click here>>.


Diaphragm Pacing System Webinar Q&A: Part II
(February 18, 2014) Our recent online presentation about the DPS clinical trial was one of NEALS' most heavily-attended recent webinars. Thank you to everyone who joined Drs. Jonathan Katz and Jeremy Shefner for the session! There were a great many questions received during the Q&A portion, and we were unable to get to all of them during the webinar. Read answers to the rest of the questions that were submitted 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>>
 
 
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.

UPDATE: (January 6, 2014) 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.
 
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
ANNOUNCEMENT: 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



ANNOUNCEMENT: New Funding Opportunities for the ALSRP
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: http://cdmrp.army.mil/funding/alsrp.shtml. 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
 
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.

2014 Regional Clinical Research Learning Institute to be Held in Philadelphia, PA
(February 7, 2014) The ALS Clinical Research Learning Institute (CRLI) is an intensive, educational program for people living with ALS (PALS) and PALS/caregiver pairs who are interested in becoming advocates for ALS clinical research, and who want to learn about the therapy development process. The 2014 Regional CRLI will take place May 3rd and 4th for PALS and PALS/caregiver pairs who live in Philadelphia and the surrounding region. NEALS researchers will present on various topics related to clinical research and advocacy. Read more>>
 
Research Ambassador Featured in Regional Magazine
(February 4, 2014) NEALS Research Ambassador Madeline Kennedy has been profiled in the current issue of Capital Region Living, an Albany, NY-based lifestyle magazine. Click here
to read how Kennedy hasn't let ALS darken her bright spirit.


South African Rugby Star to Participate in ALS Studies at Massachusetts General Hospital
(January 27, 2014) Former Springboks captain Joost Van der Westhuizen, who was diagnosed with ALS in 2011, will be traveling to the US to participate in ALS clinical studies. Read more >>


NEALS Co-Founder
Dr. Jeremy Shefner Steps Down After 18 Years

“Leading NEALS is one of the things in my professional career I am proudest of,” says Shefner.
Full story >>

 
Annual Meeting Highlights Clinical Trials Progress
The 12th Annual Meeting of NEALS was the largest and most information-packed meeting yet. Over 300 clinicians, nurses, therapists, and researchers came together to take stock of the many efforts being coordinated by NEALS, and to accelerate the pace of clinical research in ALS.
Read more >>


NEALS Executive Committee Election Results
The Northeast ALS Consortium is pleased to announce the results of the election for the Co-Chair, Investigator, and Evaluator positions on the NEALS Executive Committee. Read more >>

 


 

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