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Find out about upcoming NEALS meetings, learn more about our trial resources, and stay in touch with the latest ALS research findings.
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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
ALS Association/NEALS PALS Webinar: Mexiletine Study-Results Overview
(November 26, 2014)
Dr. Michael Weiss (University of Washington) provided an overview of the results of the now completed clinical trial of Mexiletine in patients with sporadic ALS (non-familial). Click here to view.

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: alssurvey@umich.edu. 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 and eligibility criteria 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
NEALS Meeting at the 25th International Symposium on ALS/MND
There will be a satellite meeting at the 2015 International Symposium in Brussels, Belgium for NEALS Members. The meeting is scheduled for Friday, December 5th from 7:15am-8:15am at the Square Meeting Centre, Rue Mont Des Arts, 100 Brussels. Please RSVP to Tara Lincoln (tlincoln@partners.org) to pick up your conference registration packet at the NEALS affiliate meeting!


New RFP for ALS Researchers

(October 21, 2014)
ALS ACT (ALS Accelerated Therapeutics) and the Treat ALS Northeast ALS Consortium (NEALS) clinical trials network are pleased to announce a call for phase II clinical trial applications for novel, high-potential treatments in Amyotrophic Lateral Sclerosis. The call for clinical study proposals is intended for academic-industry partnerships, including pharmaceutical, biotherapeutic/biotechnology companies, academic members of the NEALS Consortium, and ALS scientists throughout the world.  Up to USD $1,500,000 (direct costs only) in ALS ACT clinical research support it available.  Funds will be awarded in the form of infrastructure support provided by NEALS and funds for per subject fee, sample collection, pharmacodynamic marker testing and other trial related costs as needed.  For more information regarding proposal submission and selection criteria, please click here.
 
The deadline for a letter of intent is Friday, January 9, 2015. Please submit your letter of intent to researchgrants@alsa-national.org.


New Fellowship Opportunity for ALS Researchers
(October 16, 2014)
Applications for the second Virginia Freer-Sweeney Clinical Research Training Fellowship in Primary Lateral Sclerosis (PLS) is now open. The deadline to apply is December 1st, 2014. Click here for more information.

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
 
ALS Researchers Appear on "The Doctors"
NEALS Co-Chair Merit Cudkowicz, MD, MSc (Massachusetts General Hospital) and NEALS member Robert Baloh, MD, PhD (Cedars-Sinai) appeared on an episode of "The Doctors" with PALS Nanci Ryder, a celebrity publicist who opened up about her ALS diagnosis. Check your local listings for show times, and view a short clip and article about the episode here.

PALS Speaks to Congress about ALS Research
(November 19, 2014)
Attorney and PALS Michael Gollin spoke to Congress November 18th about how they can help change the balance of risks to favor successful innovation in ALS research, and why they should adopt the MODERN Cures Act. You can read Michael’s full testimony at the MODDERN Cures Act Briefing here.


Dr. Cudkowicz Appears on "CBS This Morning"
(November 18, 2014)
NEALS Co-Chair Merit Cudkowicz, MD, MSc (Massachusetts General Hospital) appeared on “CBS This Morning” to discuss donations from the ALS ice bucket challenge, and the ways that the initiative has already aided researchers in identifying new targets for treatment. You can view the full piece here.

13th Annual NEALS Meeting
(November 11, 2014)
This year's annual NEALS meeting took place October 22nd-24th in Clearwater Beach, FL. Click here to read a full recap of the event.

Fourth Annual NEALS Clinical Research Learning Institute (CRLI)
(November 11, 2014)
This year's NEALS CRLI took place on October 24th and 25th in Clearwater Beach, FL and was our largest group yet! Read more about the event here.

Cytokinetics provides update on Tirasemtiv
(November 10, 2014)
Cytokinetics, Inc announced that it has completed its review of results from BENEFIT-ALS (Blinded Evaluation of Neuromuscular Effects and Functional Improvement with Tirasemtiv ALS) and has concluded that the effects observed on Slow Vital Capacity (SVC) in PALS treated with tirasemtiv are potentially clinically meaningful. 

"We have engaged in an objective and comprehensive review of results from BENEFIT-ALS and have concluded that data favoring the effects of tirasemtiv relative to placebo on Slow Vital Capacity from this large, international Phase IIb trial are robust and warrant further investigation."

As a result, Cytokinetics has initiated planning for a potential Phase III clinical trial of tirasemtiv that could begin in 2015. Click here to read more about this update.

Genervon Phase IIa Study of GM604 Completed
(November 7, 2014)
Genervon Biopharmaceuticals, LLC announced that it has completed the analysis of its Phase 2a double blinded, randomized, placebo controlled clinical trials of Amyotrophic Lateral Sclerosis (NCT01854294) and Parkinson’s disease (NCT 01850381) for its drug candidate GM604.

"The two trials were designed to determine whether a six-dose treatment of GM6 would begin the process of disease modification. Genervon was told not to expect any statistically significant drug effects because of the small number of patients in both trials, but was delighted to find that both clinical
and biomarker data in the ALS and the PD trials reported statistically significant results."

Click here to read more about the results.

Phase II Mexiletine Study Completed
(November 4, 2014)
A phase II, 60 patient NEALS-sponsored multicenter randomized controlled trial of Mexiletine in the treatment of ALS was recently completed. Click here to read an overview of the study results.

KineMed Receives U.S. Patent Allowance for Noscapine to
Treat ALS, Parkinson’s Disease, and Diabetic Neuropathy
(September 9, 2014)
KineMed,
a life sciences company, received a patent to treat ALS and other diseases with Noscapine. Read the full press release here.

New Blog Post from PALS Madeline Kennedy

(September 4, 2014)
Madeline Kennedy, MSN, RN discusses the ALS ice bucket challenge, and her plan to beat the odds against her ALS diagnosis. Read the full post here.


NEALS Sites Continue to Participate in ALS Ice Bucket Challenge
(September 3, 2014)
The ALS Ice Bucket Challenge, started by PALS and Boston native Pete Frates, has been steadily raising awareness for the disease and encouraging donations for ALS research since its inception in the summer of 2014. Over the last few months, participation in the ALS #icebucketchallenge has gone viral on social media. The challenge has seen millions of people dump a bucket of ice water on their head and then nominate three others to either do the same or to donate money to the cause. NEALS and the ALS Multidisciplinary Clinic at Mass General Hospital completed the challenge and nominated three other NEALS sites (Drexel, SUNY Upstate, and Johns Hopkins) to do the same, encouraging those sites to then challenge other NEALS sites. Over 50 NEALS sites around the US and Canada have completed the challenge to date. To view each sites challenge video, click here.

Please consider a donation to the NEALS Consortium by clicking here.


 
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