2015 Annual NEALS Meeting Agenda*
Wednesday, November 04, 2015
Time
Event
Location
7:30 am – 8:30 am
Continental Breakfast
Hunter Foyer
7:30 am – 4:00 pm
Registration
Alcove
8:30 am – 12:30 pm
Outcomes Training Session
Hunter A&B
9:15 am – 10:15 am
EIM Study Mtg Jeremy Shefner, MD, PhD (Barrow)
Hunter C
10:30 am – 11:30 am
DPS Study Jeremy Shefner, MD, PhD (Barrow);
Jonathan Katz, MD (CPMC)
Hunter C
12:00 pm – 1:30 pm
Lunch
Hunter Foyer
12:45 pm – 1:45 pm
Bulbar Committee Gary Pattee, MD (Bryan LGH Med. Center)
Hunter C
1:15 pm – 4:15 pm
MUNE Training Session
Harbor A
1:15 pm – 2:15 pm
Biorepository Committee Robert Bowser, PhD (Barrow); Terry HeimanHarbor C
Patterson, MD (Drexel)
2:00 pm – 3:30 pm
Site Management I Training Session
Hunter A&B
3:45 pm – 5:15 pm
Site Management II Training Session
Hunter A&B
3:30 pm – 4:30 pm
Physical Therapist Committee Peggy Allred, DPT (Cedars Sinai); Sara
Hunter C
Feldman, DPT (Drexel)
3:30 pm – 4:30 pm
UMND Committee Nazem Atassi, MD, MSc (MGH)
Harbor B
3:30pm – 4:30 pm
Research Nurse Committee Darlene Sawicki, NP (MGH)
Harbor C
4:30 pm – 5:45 pm
EIM Training Session
Harbor A
4:30 pm – 5:30 pm
Ventilation Committee Katalin Scherer, MD (Arizona)
Harbor C
4:45 pm – 6:45 pm
Executive Committee
Cove
5:30 pm – 7:00 pm
Project/Data Manager & Monitor Reception
Hunter A&B
7:00 pm
Executive Committee Dinner
Caretta’s Restaurant
Thursday, November 05, 2015
7:00 am – 8:15 am
Continental Breakfast
Hunter Foyer
7:30 am – 3:30 pm
Registration
Alcove
7:00 am – 8:00 am
CABB Study Mtg James Berry, MD, MPH (MGH)
Harbor C
7:00 am – 8:00 am
C9 Study Mtg Timothy Miller, MD, PhD (Wash. U.)
Harbor A
7:00 am – 8:00 am
Imaging Committee (Nazem Atassi, MD, MSc (MGH); Eric Pioro, MD,
PhD (Cleveland Clinic); Michael Benatar, MD, PhD (U. Miami)
Harbor B
8:00 am – 9:00 am
NeuroBANK Mtg Alex Sherman (MGH)
Harbor B
8:00 am – 9:00 am
Exercise Study Mtg Nicholas Maragakis, MD (JHU)
Harbor A
8:00 am – 9:00 am
Actemra Study Mtg Shafeeq Ladha, MD (Barrow)
Harbor C
NEALS Closed Session
Hunter Ballroom
9:10 am – 10:00 am
Membership only
Terry Heiman-Patterson, MD & Jonathan Glass, MD (Co-Chairs)
General Session: Meeting Opens
Hunter Ballroom
A Novel Cellular Therapy for ALS-Autologous Transplantation of Ex
Vivo Expanded Regulatory T Lymphocytes Appel, S Houston Methodist
10:00 am – 12:00 pm
Trial Updates
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ATLIS Patricia Andres, DPT (MGH)
DPS Jeremy Shefner, MD, PhD (BNI) & Jonathan Katz, MD
(CPMC)
Nuedexta Richard Smith, MD (CNS)
SOD1 Phase I Study Timothy Miller, MD, PhD (Wash. U); Toby
Ferguson, MD, PhD (Biogen Idec)
The ALS Methodology Study Nazem Atassi, MD, MSc (MGH)
12:00 pm – 1:30 pm
Lunch
Gulf Lawn
12:15 pm – 1:15 pm
IATI Study Meeting James Berry, MD, MPH (MGH); Nicholas
Maragakis, MD (JHU)
Hunter Ballroom
12:30 pm – 1:30 pm
NeuroBANK Training
Hunter Foyer
Member Platform Presentations
Hunter Ballroom
1:30 pm – 3:30 pm
Terry Heiman-Patterson, MD & Jonathan Glass, MD (Co-Chairs)
Environmental Toxins are Associated with ALS: A Case-Control
Study of Occupational Risk Factors Goutman, S University of Michigan
National Amyotrophic Lateral Sclerosis (ALS) Biorepository
Feasibility Study Kaye, W National ALS Registry CDC/ATSDR
combined with National Amyotrophic Lateral Sclerosis (ALS) Registry:
Recruiting Patients for Research, Clinical Trials, and Epidemiological
Studies Mehta, P National ALS Registry,
CDC/ATSDR
The Endothelin System in Amyotrophic Lateral Sclerosis (ALS).
Ostrow, L Johns Hopkins University
The Eating Assessment Tool Is Accurate at Identifying Unsafe
Swallowing In Amyotrophic Lateral Sclerosis. Plowman, E
University of Florida combined with Impact of Expiratory Muscle
Strength Training in ALS: Outcomes from a Randomized Control
Trial. Plowman, E University of Florida
LRP4 and Agrin autoantibodies in ALS Rivner, M Georgia Regents
University
3:30 pm – 3:45 pm
Introduction to ALSFAC Peter Foss (ALSFAC, GE);
Merit Cudkowicz, MD, MSc (MGH)
4:00 pm – 6:15 pm
Poster Session
Harbor Ballroom
4:00 pm – 5:00 pm
NeuroBANK Training
Hunter Foyer
4:30 pm – 5:30 pm
Nutrition Committee
Reef
6:30 pm
NEALS Group Photo
Gulf Lawn
6:45 pm – 10:00 pm
Reception & Volleyball; BBQ
Gulf Lawn
Friday, November 06, 2015
7:30 am – 8:45 am
Continental Breakfast
Hunter Foyer
7:30 am – 10:00 am
Registration
Alcove
7:45 am – 8:45 am
Site Metrics Committee Daniela Grasso (MGH); Stacy Rudnicki, MD
(UAMS)
Harbor A
7:45 am – 8:45 am
BIO-02 (LABB) Study Mtg James Berry, MD, MPH (MGH)
Harbor B
7:45 am – 8:45 am
fALS/FTD Committee Claire Flaherty, PhD (Penn State); Timothy Miller,
MD, PhD (Wash. U)
Cove
General Session
Hunter Ballroom
9:00 am – 9:45 am
Sub-Committee Updates
Biorepository
Bulbar
fALS/FTD
Imaging
Nutrition
PEACe
Physical Therapist
Research Nurse
Site Metrics
UMND
Ventilation
NeuroBANK
10:00 am – 1:00 pm
Science Symposium: ALS and FTD: The Implications of the C9
Expansion
Hunter Ballroom
Robert Brown, MD, D.Phil & Jeffrey Rothstein, MD, PhD (SAB Co-Chairs)
Update on the genetics of Frontotemporal Dementia
Rosa Rademakers, PhD (Mayo Clinic, Jacksonville)
Therapeutic Approaches and Biomarkers for c9FTD/ALS
Leonard Petrucelli, PhD (Mayo Clinic, Jacksonville)
Should we disclose research-based genetic results to patients or
their relatives?
Jaime E. Vengoechea, MD (Emory
University)
1:00 pm – 2:00 pm
Boxed Lunch Available
1:15 pm – 2:15 pm
PEACe Committee Rick Bedlack, MD, PhD (Duke)
Hunter A
1:15 pm – 2:15 pm
Retigabine Study Mtg Brian Wainger, MD, PhD (MGH)
Hunter B
1:15 pm – 2:15 pm
SOD1 Study Mtg Timothy Miller, MD, PhD (Wash. U)
Hunter C
3:15 pm
NEALS Meeting Closes
*Agenda subject to change