The ILC 5th Annual Ehlers Danlos & Chronic Pain Conference
November 4 - 5, 2017

Fitting the Pieces Together and the Importance of Multidisciplinary Access to Care


Saturday, November 4, 2017

Conference Chair and Moderator: Dr. Roberto Mendoza and Dr. Kristianna Martiniuk
7:30 – 8:20 AM Registration and Continental Breakfast Foyer & Gallery
8:20 AM Registrants to take their seat announcement
8:30 AM Welcome The ILC Foundation Auditorium
8:35 to 8:45 AM Conference Chair – Overview Roberto Mendoza, MD, Genetics Auditorium
8:45 to 9:15 AM EDS Needs Assessment – Overview of Patient Survey Outcomes Gail Ouellette, PhD, Genetics Auditorium
9:15  – 9:45 AM Genetic Research Hanna Faghfoury, MD, Genetics Auditorium
9:45 – 10:30 AM Autonomic Dysfunction and  Chronic Fatigue in EDS Blair Grubb, MD, Cardiology & Internal Medicine Auditorium
10:15 – 10:30 AM Morning Break & Networking Gallery
10:30 – 11:40 PM Mast Cell 101 Lawrence B. Afrin, MD, Immunology and Allergy Auditorium
11:40 – 11:50 AM Mast Cell Reserch, Division of Allergy and Clinical Immunology, Dr. Peter Vadas Ingrid Cheung, Intern Researcher, Auditorium
12:00 – 1:00 PM LUNCH Patient Peer Support Networking Gallery
12:00 – 1:00 PM LUNCH Presenters and Healthcare Informal Instructional Networking Meeting Room 1
1:00 – 1:08 PM Patient Presentation Denise Livingston, Brooklyn Mils and Olivia Smeenk Auditorium
DIAGNOSTICS AND NEUROSURGERY PANEL CHAIR: JAMES T. RUTKA, OC, O Ont, MD, PhD, FRCSC, FRSC, FACS, FAANS, RS McLaughlin Professor and Chair Department of Surgery, University of Toronto Auditorium
1:10 – 1:35 PM Imaging Cervical and Cranio-Cervical Instability in Conective Tissue Disorders Myles Koby, MD, Neuroradiology Auditorium
1:35 – 1:55 PM Biological Therapy for the Degenerative Disc:  Biochemical, Molecular and Proteomic Lessons from Mother Nature W. Mark Erwin DC PhD, CCRF Professor in Disc Biology Assistant Professor, Divisions of Neurological and Orthopaedic Surgery, The Spine Programme, University of Toronto Auditorium
2:05 – 2:35 PM The Differential Diagnosis of Headaches in the EDS and Chiari Population Fraser Henderson, MD, Neurosurgery Auditorium
2:45 – 3:00 PM BREAK AND NETWORKING Gallery
3:00 – 3:30 PM Cerebral Spinal Fluid and complications in the EDS Population Wouter I. Schievink, M.D., Professor of Neurosurgery, Director, Cerebrospinal Fluid Leak Program, Director, Vascular Neurosurgery Program, Cedars-Sinai Medical Center Auditorium
3:40 – 4:10 PM Re-Tethered Spinal Cord in EDS Sandrine DeRibaupierre, MD, FRCSC, Associate Professor, London Health Sciences, Pediatric Neurosurgery Auditorium
4:20 – 4:50 PM TMJ Manifestations in EDS John Mitakides, DDS, DAACP Auditorium

Sunday, November 5, 2017

 Conference Chair and Moderator:  Dr. Roberto Mendoza and Dr. Kristianna Martiniuk
8:00 – 8:50 AM Registration, Continental Breakfast and Networking Gallery
8:55 – 9:00 AM Welcome and Ehlers Danlos Society video The ILC Foundation Auditorium
9:00 – 10:20 AM CHRONIC PAIN PANEL CHAIR – (20 min ea/20 min Q&A) Norm Buckley, MD, FRCPC, SPOR Chronic Pain Network Auditorium
  –  9:00 – 9:20 AM Managing Care Where No EDS Clinic Exists Bryan MacLeod, MD, CFPC, FCFP Auditorium
  –  9:20 – 9:40 AM Medical Marijuana Danial Schecter, MD Auditorium
  –  9:40 – 10:00 AM Acute Pain Management for the Chronic Pain Patient Paul Tumber, MD, Anesthesiology Auditorium
  –  10:00 – 10:20 AM Q&A All
10:20 – 10:35 AM BREAK AND NETWORKING Gallery
10:35 – 11:05 AM Mast Cell Question and Answers Lawrence Afrin, MD, Immunology and Allergy Auditorium
11:05 – 11:45 AM Tools and supports for living with EDS Kim Daniel, PhD, Psychology Auditorium
11:45 – 12:45 PM LUNCH AND NETWORKING Patient Peer Support Gallery
11:45 – 12:45 PM LUNCH AND INFORMAL NETWORKING DISCUSSIONS Presenters and Healthcare Providers  Meeting Room 1
12:45 – 12:55 PM Patient Presentations Chris Norris Auditorium
12:55 THERAPIES PANEL:  Chair – Christina Pridmore Auditorium
 – 12:55 – 1:15 PM In common thinking in physiotherapies in EDS Christina Pridmore, R. Kin, D.O.M.P., D.Sc.O. Auditorium
 – 1:15 – 1:50 PM Ehlers Danlos Syndromes in children and adults: Functional disAbility and Treatment Raoul Englebert, PhD, Professor R.H.H. and Nicoleta Woinarosky, BSocSc (Hon), MHK Auditorium
 – 1:50 – 2:10 PM Pelvic Floor Physiotherapy Jessica Nargi, MScPT, BKIN, Pelvic Health Physiotherapist Auditorium
 – 2:10 – 2:30 PM EDS and disorders of the Pelvic Floor Colleen McDermott, MD, Urogynecology Auditorium
 – 2:30 – 3:00 PM Q&A All Auditorium
3:00 – 3:15 PM BREAK AND NETWORKING Gallery
3:15 – 4:30 PM PM Closing and Breakout Sessions The ILC Foundation Auditorium
GROUP SESSIONS: Sharing, Caring and Zebra Hacks All
 – Youth Group Session (Age 16 – 24)  Kim Daniel, Phd, Psych and Diane Patterson, SW Mental
Meeting Room 2
 – Patients and Carers Session  Tammy Stadt Meeting Room 1 and Gallery


SIGN UP SHEET (15 Min/session): Income Supports for people with disAbilities

Bob Vaughan and Glen Warren



SPONSOR: Digisplint Inc. – Patient Quiet Areas and Volunteer


EDS Conference Schedule 2017 (pdf)

The ILC Foundation

The ILC Foundation