16th Annual NEALS Meeting Recap

The 16th Annual Northeast ALS Consortium (NEALS) meeting was held October 3-5, 2017 in Clearwater, Florida. NEALS now has 122 member sites and there were researchers, clinicians and allied health professionals from throughout the country in attendance.

Dr. Terry Heiman-Patterson, Sara Feldman, PT, DPT, and Kathleen Hatala, RN, represented the MDA/ALS Center of Hope at Temple University. Dr. Terry Heiman-Patterson is co-chair of NEALS along with Dr. Jonathan Glass of Emory University.  Sara Feldman is the representative for the Clinical Evaluators on the Executive Board of NEALS and Co-chair of the PT Committee with Peggy Allred, PT, DPT of Cedars-Sinai Hospital. Kathleen Hatala, RN, is the newest member and joined the Research Nurse Committee.

The first day began with the Executive Board Meeting. Click here to learn more about the Executive Board of NEALS.

The second day, Outcome Measures training, the Scientific Advisory Board meeting, and the committee and study meetings began; followed by the General Meeting the next day.  Dr. Heiman-Patterson and Dr. Glass opened the meeting and the attendees heard updates from the committees and NEALS trial updates. We heard from Dr. Nick Maragakis (Johns Hopkins) on the Resistance and Endurance Exercise Trial; Dr. Anne-Marie Wills (MGH) on using Electronic-health Application to Measure Outcomes Remotely; and from Dr. Robert Baloh (Cedars-Sinai) on the Human Neural Progenitor Cells Secreting Glial Cell Line-Derived Neurotrophic Factor trial.
The afternoon session included platform presentations chosen from the abstract submission. These included: Dr. Gary Pattee (Neurology Associates) Best Practices Protocol for the Evaluation of Bulbar Dysfunction in ALS: Summary Recommendations from the NEALS Bulbar Subcommittee Symposium; J. Raymond (National ALS Registry) Dissemination of Data by the National ALS Registry; Dr. Katherine Nicholson (MGH, NCRI) Gut Microbiome Assessment in People with ALS: An Interval Analysis; E. Beghi (IRCCS, Milan) Randomized double-blind placebo-controlled trial of acetyl-L- carnitine for ALS; Dr. Rick Bedlack (Duke) Final results from an open-label, single-center, hybrid-virtual 12- month trial of Lunasin for patients with ALS; Dr. Angela Genge (McGill) Masitinib as an add-on therapy to riluzole is safe and effective in the treatment of amyotrophic lateral sclerosis; Dr. Carlayne Jackson (UT Health, San Antonio) Clinical Trial Design, Interpretation, and Generalizability of Results: Lessons from the Edaravone Development Program
Friday’s session included the Science Symposium; the theme was Neuroinflammation: Basic and Clinical Approaches. The science update was given by Dr. Bob Brown (MGH), Dr. Jeff Rothstein (Hopkins) and Dr. Timothy Miller (WashU), the Scientific Advisory Board Leadership. Dr. Stanley Appel (Methodist Hospital) chaired the Science Symposium and spoke first on Suppressing Neuroinflammation: Cell Based Therapy of ALS; Dr. Nazem Atassi (MGH) spoke on Imaging Glial Activation as a Clinical Trial Outcome; and Dr. Shane Lidlow (Stanford) ended with What do Reactive Astrocytes Do?

With that, NEALS meeting closed and the Clinical Learning Institute began.
The CRLI is lead by Dr. Rick Bedlack (Duke) and the goal is to educate and empower people living with ALS to be “Research Ambassadors.” Dr. Heiman-Patterson (Temple) is one of the instructors.

The mission of NEALS is to “translate scientific advances into new treatments for people with ALS as rapidly as possible.” This open collaboration between both scientific and clinical researchers will certainly move us closer to that goal!