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NEALS Educational Webinars

 

 
NEALS offers live, online seminars (or “webinars”) for people with ALS and other motor neuron disease. Experts explain the scientific rationale and design of current ALS research. Our webinars also offer participants the opportunity to ask questions directly of the experts running clinical trials.
 

Upcoming ALS Association/NEALS PALS Webinars

*Stay tuned for some upcoming webinars!

Archived NEALS Webinars

To view the entire library of ALS Association/NEALS PALS webinars, click here.

ALS Association/NEALS PALS Webinar: Clinical Trial Pipeline Series - Summer 2014
Dr. Merit Cudkowicz (Massachusetts General Hospital) discusses the ALS clinical trial pipeline and answers questions about the current state of clinical research in ALS and motor neuron disease.
Presented on Friday, August 8. Click here to view.


Diaphragm Pacing System™ (DPS) In Participants with Amyotrophic Lateral Sclerosis: An Informational Webinar 
Dr. Jeremy Shefner and Dr. Jonathan Katz will present the DPS in ALS clinical trial and discuss why the completion of this particular study is so important for the PALS population. They will review the study rationale and background of the DPS device,  provide an overview of the inclusion criteria and talk about what would be expected of a patient if they were to participate in the study.
Presented on August 6, 2014: Click here to view.  


ALS Association/NEALS PALS Webinar: Stem Cells
Stem Cells offer tremendous potential, but there are many misconceptions surrounding them.  In this program, Dr. James Berry (Massachusetts General Hospital) will review mesenchymal (bone marrow derived) stem cells and discuss the Brainstorm Cell trials.  Dr. Jon Glass (Emory) will review embryonic stem cells and discuss the Neuralstem trials.  Dr. Richard Bedlack (Duke University) will review off-label for-profit stem cell clinics and offer some advice on "red flags" to watch out for.
Presented on July 16, 2014. Click here to view.

ALS Symposium Webinar
A recording of the ALS Symposium and a Q&A session that took place following the presentations. Presented on June 7, 2014. Click here to view.

ALS Association/NEALS PALS Webinar: Tele-medicine
In this program, Drs. Michael Pulley (UF Health Jacksonville) and Richard Bedlack (Duke University) will discuss the ways in which they are using a technology called Tele-Medicine to interact with patients with ALS that are uanble to travel to their clinics.  Dr. Pulley's program is for patients with ALS in Florida.  Dr. Bedlack's is for veterans with ALS in the Mid-Atlantic Region.  Specific examples of how this model has improved the care of patients with ALS will be presented.  A proposal for the use of Tele-Medicine to reduce some of the burdens that research places on patients will be outlined. Presented on June 4, 2014. Click here to view.

ALS Association/NEALS PALS Webinar: Trial of Resistance and Endurance Exercise in Amyotrophic Lateral Sclerosis
Dr. Nicholas Maragakis (Johns Hopkins University) discusses the rationale behind this clinical study and explains how it helps 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. Presented on April 8, 2014. Click here to view.

ALS Association/NEALS PALS Webinar: Biomarkers in ALS
Dr. James Berry and Dr. Nazem Atassi discuss the importance of biomarkers research for studying ALS.  Drs. Atassi and Berry highlight ongoing imaging and biofluid studies in ALS, including the Positron Emission Tomography (PET/MRI) and Longitudinal Biomarkers Studies. Presented on April 7, 2014. Click here to view 

ALS Association/NEALS PALS Webinar: ALS Clinical Trial Pipeline Series - Winter 2014
Dr. Jeremy Shefner (SUNY Upstate Medical Center University) discusses the ALS clinical trial pipeline and answers questions about the current state of clinical research in ALS and motor neuron disease. Presented on February 14, 2014. Click here to view.


Diaphragm Pacing System (DPS) in Participants with ALS - Clinical Trial: An Informational NEALS Webinar

Principal Investigators Dr. Jonathan Katz and Dr. Jeremy Shefner explain the rationale and background of this study, describe the patient population being recruited, and discuss what is expected of those who enroll. Presented on February 13, 2014. Click here to view.


The 2013 Clinical Research Learning Institute - October 4th and 5th 2013
The ALS Clinical Research Learning Institute, sponsored by the ALS Association's TREAT ALS initiative and led by NEALS, is an intensive program dedicated to educating a group of ALS patient/caregiver pairs on clinical research and therapy development and empowering this group to be advocates for ALS clinical research.

Watch Friday's session

Watch Saturday's session


Upper Motor Neuron Disease Task Force Update 8-26-13

The NEALS Upper Motor Neuron Disease (UMND) Task Force is dedicated to improving care and quality of life while furthering scientific understanding and developing treatments for people with UMND, including Primary Lateral Sclerosis (PLS) and Hereditary Spastic Paraplegia (HSP).

Drs. Nazem Atassi (Massachusetts General Hospital) and Jinsy Andrews (Hospital for Special Care) discussed ongoing UMND projects.  Watch it now.


ALSUntangled: Opening the X-Files of ALS 7-31-13

Dr. Richard Bedlack (Duke University) discussed ALSUntangled, which investigates alternative and off-label ALS treatments. He highlighted some recently completed reviews, new features, and how PALS can get involved.  Watch it now.


Summer 2013 ALS Clinical Trial Pipeline Series
Merit Cudkowicz, MD, (Massachusetts General Hospital) provided an overview of ALS treatments and discussed the state of ALS clinical research in 2013. 

Read the Q&A from this webinar.

Get the slide deck.


TDI-132/Gilenya Informational Webinar 6-26-13
Dr. James Berry (Massachusetts General Hospital) provided an overview of the scientific rationale for this exciting \trial as well as discuss the next steps forward. **The TDI-132/Gilenya trial is not funded by The ALS Association.  Watch it now.


Genetic Research in ALS 6-18-13
Robert Brown, DPhil, MD, (University of Massachusetts) highlighted ongoing genetic research in ALS and discussed implications for people living with ALS. Watch it now.

Get the slide deck.


Selection Trial of High Dosage Creatine & Two Dosages of Tamoxifen Webinar 5-20-13
Nazem Atassi, MD, (Massachusetts General Hospital) discussed study rationale, preliminary results, and next steps for the selection trial.  Watch it now.


Spring 2013 ALS Clinical Trial Pipeline Series 3-27-13
Merit Cudkowicz, MD, (Massachusetts General Hospital) provided an overview of ALS treatments and discussed the state of ALS clinical research in 2013.  Watch it now.

Read the remaining Q&A from this webinar.

Get the slide deck.


BENEFIT-ALS: Blinded Evaluation of Neuromuscular Effects and Functional Improvement with Tirasemtiv in ALS 3-12-13
Jeremy Shefner, MD (SUNY Upstate Medical University), Jinsy Andrews, MD (Cytokinetics, Inc.), and Andrew Wolff, MD (Cytokinetics, Inc.) discussed rationale and background of the phase IIB trial of tirasmetiv in ALS.  Watch it now.


Mexiletine for Patients with Sporadic ALS 1-11-13
Michael Weiss, MD (University of Washington) provided study rationale and background for the clinical trial of Mexiletine in patients with sporadic ALS (non-familial).  Watch it now.


ALS Clinical Trials: Expediting Therapy Development 11-30-12
Merit Cudkowicz, MD, MSc (Massachusetts General Hospital) reviewed ALS symptoms and diagnosis, provided an overview of ALS treatments, and discussed the ALS clinical research pipeline. 
Watch it now.

Read the remaining Q&A from this webinar.


Resistance and Endurance Exercise in ALS Trial Webinar 9-11-12
Nicholas Maragakis, MD (Johns Hopkins University) presented rationale for the Exercise Trial in ALS, which is recruiting patients with ALS in Baltimore, Boston, St. Louis, and Charlotte, NC and includes an at-home exercise regimen.  Watch it now.


Upper Motor Neuron Disease Research Webinar 7-2-12
Hiroshi Mitsumoto, MD (Columbia University) and Nazem Atassi, MD, MMSc, (Massachusetts General Hospital, Harvard Medical School) presented their research initiatives for people with early Upper Motor Neuron Disease (UMD) and Primary Lateral Sclerosis (PLS). Watch it now.


Determining the Effect of Nuedexta on Speech and Swallowing in ALS: A Multicenter Trial Webinar 6-5-12
Richard Smith MD (Center for Neurologic Study) and Jeremy Shefner MD, PhD, (SUNY Upstate Medical University), provided an overview of the scientific rationale and next steps forward for the upcoming NEALS trial of Nuedexta.  Watch it now.


Informed Consent and Ethical Considerations in Research Webinar 4-30-12
Nazem Atassi, MD, MMSc, (Massachusetts General Hospital, Harvard Medical School) and James Russell, DO, (Curt and Shonda Schilling ALS Clinic at Lahey Clinic) presented on the interplay of ethical considerations in research and informed consent. Watch it now.


Imaging Biomarkers Research Webinar 4-16-12
Nazem Atassi, MD, MMSc, (Massachusetts General Hospital, Harvard Medical School) and James Berry, MD, MPH, (Massachusetts General Hospital, Harvard Medical School) discussed the importance of biomarkers research and highlighted ongoing imaging and biofluid studies in ALS.  Watch it now.


Clinical Trial Design Webinar 3-20-12
Jeremy Shefner, MD, PhD, (SUNY Upstate Medical University) held an informational webinar providing a detailed background on trial design, including: process, expectations of phases, and the challenges of drug development.  Watch it now.


Stem Cell Webinar 3-13-12
Jonathan Glass, MD, (Emory ALS Center) and Clive Svendsen, PhD, (Cedars Sinai Medical Center) discussed the role of stem cell discovery and its contribution to ALS research.  Watch it now.


Supporting Advocacy Efforts Webinar 2-13-12
Richard Bedlack, MD, PhD, (Duke University) held an informational web seminar for people with ALS and caregivers interested in learning more about ways to advocate for clinical trial enrollment.
Watch it now.
 

  • The Ceftriaxone Study Webinar: May 5th, 2011
    Explains the scientific rationale and protocol design for the clinical trial of Ceftriaxone in Amyotrophic Lateral Sclerosis. Click on the image below to view the recording.


  • The ISIS SOD1RX Study: March 2nd, 2011 (external posting)
    This webinar, hosted by NEALS and ISIS Pharmaceuticals, explains the scientific rationale and protocol design for the clinical trial of ISIS SOD1RX in Familial ALS.

    Go to the ISIS website to view the webinar>>.

Other Useful Webinars
  • ALS TDI Webinar on TDI 132 (Gilenya): March 13th, 2012 (external posting)
    The focus of this webinar was to review the scientific rationale for the TDI132 clinical trial and to describe the current projected -as of March 13th, 2012- clinical trial design.  Watch it here.
  • MDA Webinar on Nutrition in ALS: January 1st, 2011 (external posting)
    This webinar, hosted by the Muscular Dystrophy Association (MDA), offers advice on the nutritional needs of people with ALS,  as well as the scientific rationale and protocol design for the ALS High Fat Study.Go to the MDA website to view the webinar>>.
  • Biomarkers? What are they? October 2010 (external posting)                                     The ALS Association hosted a Webex call titled, "BIOMARKERS: What are they? Why are they so critical to accelerating discovery of treatments for ALS?" If you missed this Webex, view it here.

 

 

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