2018 Regional RNDS

October 27, 2018 @ 8:00 am - 5:30 pm EDT

An education and advocacy conference for families, caregivers and individuals diagnosed with Acute Disseminated Encephalomyelitis (ADEM), MOG Antibody Disease (MOGAD), Neuromyelitis Optica Spectrum Disorder (NMOSD), Optic Neuritis (ON), and Transverse Myelitis (including the subtype Acute Flaccid Myelitis)

Hosted by

Welcome to the 2018 Regional Rare Neuroimmune Disorders Symposium for Acute Disseminated Encephalomyelitis (ADEM), MOG Antibody Disease (MOGAD), Neuromyelitis Optica Spectrum Disorder (NMOSD), Optic Neuritis (ON), and Transverse Myelitis (TM) (including the subtype Acute Flaccid Myelitis).

This conference hosted by The Siegel Rare Neuroimmune Association (SRNA) and Boston Children’s Hospital Center for Pain and The Brain is dedicated to the exchange of information regarding diagnosis, research and treatment strategies and to providing an opportunity to bring together the community of individuals diagnosed with these rare neuroimmune disorders, families, caregivers and the medical professionals who have interest and are specializing in these disorders.

OBJECTIVES

Gather an understanding of the knowledge to date on the biology and causes of rare neuroimmune disorders and how they relate to each other
Learn about the latest medical and surgical strategies to manage the symptoms associated with these chronic rare neuroimmune disorders

AUDIENCE

This conference is open to all individuals diagnosed with rare neuroimmune disorders, their families and caregivers. Medical professionals interested in these disorders are also welcome to attend.

*This event is funded in part by the sponsors listed below and the Translational Research Program at Boston Children’s Hospital

Online registration for the 2018 Regional RNDS has closed. On-site registration will be possible at the event.

Agenda

Saturday, October 27, 2018

Details

8:00-9:00 am	Breakfast and Registration
9:00-9:15 am	Welcome Nadia Barakat, PhD \| Boston Children’s Hospital
9:15–9:45 am	Understanding Transverse Myelitis Leslie Benson, MD \| Boston Children’s Hospital
9:45-10:15 am	Acute Flaccid Myelitis Benjamin Greenberg, MD, MHS \| University of Texas Southwestern and Children’s Medical Center
10:15-10:45 am	Neuromyelitis Optica Spectrum Disorder and Optic Neuritis Michael Levy, MD, PhD \| The Johns Hopkins University School of Medicine
10:45-11:00 am	Break
11:00-11:30 am	Acute Disseminated Encephalomyelitis Mark Gorman, MD \| Boston Children’s Hospital Farrah J. Mateen, MD, PhD \| Massachusetts General Hospital
11:30-12:00 pm	MOG Antibody Disease Tanuja Chitnis, MD \| Harvard Medical School
12:00-1:00 pm	Lunch
1:00-1:30 pm	Updates from The Siegel Rare Neuroimmune Association Gabrielle (GG) deFiebre, MPH \| The Siegel Rare Neuroimmune Association Rebecca Whitney \| The Siegel Rare Neuroimmune Association
1:30-2:45 pm	Panel on Symptom Management Moderated by Elisa Holt \| SRNA Community Ambassador Farrah J. Mateen, MD, PhD \| Massachusetts General Hospital Christine N. Sang, MD, MPH \| Brigham and Women’s Hospital Christine Sieberg, PhD, EdM, MA \| Boston Children’s Hospital Benjamin Greenberg, MD, MHS \| University of Texas Southwestern, Children’s Medical Center Mark Gorman, MD \| Boston Children’s Hospital Leslie Benson, MD \| Boston Children’s Hospital Michael Levy, MD, PhD \| The Johns Hopkins University School of Medicine
2:45-3:15 pm	Rehabilitation and Recovery Jenna Elie, PT, DPT \| Northeast Arc Early Intervention
3:15-3:30 pm	Break
3:30-3:50 pm	Updates in Remyelination Strategies Benjamin Greenberg, MD, MHS \| University of Texas Southwestern and Children’s Medical Center
3:50-4:10 pm	Imaging and Rare Neuroimmune Disorders Nadia Barakat, PhD \| Boston Children’s Hospital Robert Barry, PhD \| Massachusetts General Hospital
4:10-4:30 pm	Genetics of Familial Transverse Myelitis Michael Levy, MD, PhD \| The Johns Hopkins University School of Medicine
4:30-5:10 pm	Q & A – Open Session
5:10-5:20 pm	Closing remarks

© The Siegel Rare Neuroimmune Association and Boston Children’s Hospital’s Center for Pain and The Brain take responsibility for the content of this education activity. This schedule is subject to change.

About The Center for Pain and the Brain

The Center for Pain and the Brain is a multidisciplinary team comprised of leading neurologists, physician-scientists, psychologists, physicists and neurobiologists. Founded and directed by David Borsook MD PhD, the Center spans Harvard Medical School, Boston Children’s Hospital, Massachusetts General Hospital and McLean Hospital. Our research focuses on the discovery of novel pain pathways, developing novel high-throughput methods for evaluating analgesics, and incorporating results from animal research into human applications. We are one of the few Centers that evaluates both pediatric and adult patient groups. Conducting neuroimaging studies in both acute and chronic pain cohorts as well as experimental pain in healthy volunteers, we seek to transform and improve the field of pain medicine.

Hotel

Sponsorship