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2019 Rare Neuro-Immune Disorders Symposium

September 19 - September 21

An education and advocacy conference for families, caregivers and individuals diagnosed with Acute Disseminated Encephalomyelitis (ADEM), Acute Flaccid Myelitis (AFM), MOG Antibody-Associated Disease (MOG-Ab disease), Neuromyelitis Optica Spectrum Disorder (NMOSD), Optic Neuritis (ON), and Transverse Myelitis (TM)


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Welcome to the 2019 Rare Neuro-Immune Disorders Symposium (RNDS), where we will learn about Acute Disseminated Encephalomyelitis (ADEM), Acute Flaccid Myelitis (AFM), MOG Antibody-Associated Disease (MOG-Ab disease), Neuromyelitis Optica Spectrum Disorder (NMOSD), Optic Neuritis (ON), and Transverse Myelitis (TM), and receive updates on the latest clinical and research advances, and learn from each other to improve the quality of life of individuals and families affected by these rare neuro-immune disorders.The 2019 RNDS 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 rare neuro-immune disorders, families, caregivers, and the medical professionals who have interest and are specializing in these disorders

Objectives

  1. Gather an understanding of the latest knowledge on the biology and causes of rare neuro-immune disorders (ADEM, AFM, MOG-Ab disease, NMOSD, ON, and TM) and how they relate to each other
  2. Learn about the latest medical and surgical strategies to manage the symptoms associated with these chronic disorders
  3. Gain knowledge on current and upcoming scientific research and clinical studies that will improve the quality of life of our community

Audience

This conference is open to all individuals diagnosed with ADEM, AFM, MOG-Ab disease, NMOSD, ON, and TM, their families and caregivers. Medical professionals interested in these disorders are also welcome to attend. The TMA can provide certificates for attendance for those who would like to apply for CME credits.

Connect

Attendees will have the opportunity to connect with one another, share experiences, interact with medical professionals and researchers, learn about and participate in research studies and TMA programs during the two-day educational symposium.


Register


Register: Members

Register: Non-members



2019 RNDS Agenda

Thursday, September 19, 2019

5:00-5:30 pm  Registration Begins
5:30-7:30 pm   Welcome Reception and Connect

Friday, September 20, 2019

7:00-8:00 am  Breakfast and Registration
8:00- 8:15 am   Welcome and Goals of the 2019 RNDS
Sandy Siegel, PhD | President, The TMA
8:15-9:00 am Living with a Rare Neuro-immune Disorder: Sharing Stories and Experiences
Moderated Discussion with Members of our Community
9:00-9:30 am Stronger Together: Why Study These Disorders as a Spectrum?
Benjamin Greenberg, MD, MHS | University of Texas Southwestern and Children’s Medical Center

Sessions on the Diagnosis and Treatment of Rare Neuro-immune Disorders: Pediatric and Adult

9:30-10:00 am  Transverse Myelitis
Michael Sweeney, MD | University of Louisville
10:00-10:30 am  Acute Flaccid Myelitis
Sarah Hopkins, MD, MPH | Children’s Hospital of Philadelphia
10:30-10:45 am Mid-morning Break
10:45-11:15 am MOG Antibody-Associated Disease
Kyle Blackburn, MD | University of Texas Southwestern Medical Center
11:15-11:45 am Neuromyelitis Optica Spectrum Disorder
Michael Levy, MD, PhD | The Johns Hopkins University School of Medicine
11:45-12:15 pm Acute Disseminated Encephalomyelitis
Cynthia Wang, MD | University of Texas Southwestern Medical Center
12:15-1:15 pm Connect and Lunch
1:15-1:45 pm Recurrent vs Monophasic Disorders
Sara Qureshi, MD | Billing’s Clinic
1:45– 2:15 pm Vascular Myelopathies
Carlos Pardo-Villamizar, MD | The Johns Hopkins University School of Medicine
2:15-2:45 pm Rheumatological conditions and Rare Neuro-immune Disorders
Michael Bradshaw, MD | Billing’s Clinic
2:45-3:00 pm Updates from the TMA
TMA Staff
3:00-3:15 pm Afternoon Break
3:15-4:15 pm The Future of NMOSD Therapeutics: What Have We Learned?
Michael Levy, MD, PhD | The Johns Hopkins University School of Medicine
Benjamin Greenberg, MD, MHS | University of Texas Southwestern and Children’s Medical Center
Alexion Pharmaceuticals
VielaBio
More speakers TBD
4:20-4:50 pm Small group workshop sessions (select one topic in each session)
SGWS I
Finding Medical Care in Your Area
Sara Qureshi, MD | Billing’s Clinic
Denise Maddox, RN | University of Texas Southwestern and Children’s Medical Center
Katherine Treadaway, LCSW, MSCIR | University of Texas Southwestern Medical Center
SGWS II
IEPs and 504s
Anjali Forber-Pratt, PhD | Vanderbilt University
Lana Harder, PhD | University of Texas Southwestern and Children’s Medical Center, Dallas
5:00-5:30 pm Small group workshop sessions (select one topic in each session)
SGWS III
ADA, Disability, and Benefits
Anjali Forber-Pratt, PhD | Vanderbilt University
Sandy Hanebrink, OTR/L, CLP, FAOTA | Touch the Future, Inc.
Katherine Treadaway, LCSW, MSCIR | University of Texas Southwestern Medical Center
SGWS IV
Sexual Dysfunction: Answers to the Questions You Were Afraid to Ask
Philippines Cabahug, MD | The Kennedy Krieger Institute

Saturday, September 21, 2019

7:30-8:30 am  Breakfast
8:30- 9:00 am   Rehabilitation and Rare Neuro-immune Disorders: Current Best Practices and Future Advances
Cristina Sadowsky, MD | Kennedy Krieger Institute
9:00-9:20 am Study to Investigate the Safety of the Transplantation of Human Glial Restricted Progenitor Cells in Transverse Myelitis
Benjamin Greenberg, MD, MHS | University of Texas Southwestern and Children’s Medical Center
9:20-9:40 am Are Rare Neuro-immune Disorders Genetic?
Michael Levy, MD, PhD | The Johns Hopkins University School of Medicine
9:40-10:45 am Collaborative Efforts to Address an Urgent Health Need: AFM Working Group
Carlos Pardo-Villamizar, MD | The Johns Hopkins University School of Medicine
Benjamin Greenberg, MD, MHS | University of Texas Southwestern and Children’s Medical Center
Sarah Hopkins, MD, MPH | Children’s Hospital of Philadelphia
Janell Routh, MD, MHS | CDC
Emily Erbelding, MD, MPH | NIAID, NIH
Cristina Sadowsky, MD | Kennedy Krieger Institute
More speakers TBD
10:45-11:00 am Mid-morning Break
11:00-11:30 am What is Spasticity in Rare Neuro-immune Disorders?
Philippines Cabahug, MD | The Kennedy Krieger Institute
11:30-12:00 pm All Things Urological: UTIs, Catheters, and Incontinence
Cristina Sadowsky, MD | Kennedy Krieger Institute
12:00-12:30 pm Why Am I So Tired All the Time?
Allen DeSena, MD, MPH | Carolinas HealthCare System Neurosciences Institute
12:30-1:30 pm Connect and Lunch
1:30- 2:00 pm The Central Nervous System Connection: Depression and Cognitive Dysfunction
Lana Harder, PhD | University of Texas Southwestern and Children’s Medical Center
2:00-2:20 pm Updates in Imaging Research
Nadia Barakat, PhD | Boston Children’s Hospital
2:20-2:50 pm What is Pain, Numbness, and Tingling?
Jacqueline A. Nicholas, MD, MPH | Ohio Health
2:50-3:10 pm New Trends in Pain Management
Maureen A. Mealy, PhD, RN, BSN, MSCN | Viela Bio
3:10-3:30 pm How is Disability Identity Formed? Findings from a Study with Adolescents
Anjali Forber-Pratt, PhD | Vanderbilt University
3:30-3:45 pm Afternoon Break
3:45-4:15 pm Pregnancy And Rare Neuro-immune Diagnosis
Riley Bove, MD | UCSF Medical Center
4:15-4:45 pm How to Manage Constipation and Prevent Accidents: Bowel Management Strategies
Janet Dean, MS, RN, CRRN, CRNP, CRND | Kennedy Krieger Institute
4:45-5:50 pm The Future of Rare Neuro-Immune Disorder Care: Meet the Fellows and Q&A
Michael Sweeney, MD | University of Louisville
Cynthia Wang, MD | University of Texas Southwestern Medical Center
Kyle Blackburn, MD | University of Texas Southwestern Medical Center
Jonathan Galli, MD | University of Utah
Allen DeSena, MD, MPH | Carolinas HealthCare System Neurosciences Institute
5:50-6:00 pm Closing Remarks
Carlos Pardo-Villamizar, MD | The Johns Hopkins University School of Medicine


Crowne Plaza, Columbus – Downtown
33 East Nationwide Boulevard
Columbus, OH, 43215

To make a reservation, please call (614) 461-2642 and mention the code “RND” or book online using the following link: Crowne Plaza – RND. Guests will need to provide a credit card to guarantee their reservation and can cancel up to 24 hours before arrival.

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Details

Start:
September 19
End:
September 21
Event Category:

Venue

Crowne Plaza, Columbus – Downtown
33 East Nationwide Boulevard
Columbus, OH 43215 United States
+ Google Map

Details

Start:
September 19
End:
September 21
Event Category:

Venue

Crowne Plaza, Columbus – Downtown
33 East Nationwide Boulevard
Columbus, OH 43215 United States
+ Google Map