An education and advocacy conference for families, caregivers and individuals diagnosed with Acute Disseminated Encephalomyelitis (ADEM), Acute Flaccid Myelitis (AFM), MOG Antibody Disease (MOGAD), Neuromyelitis Optica Spectrum Disorder (NMOSD), Optic Neuritis (ON), and Transverse Myelitis (TM)
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Welcome to the 2019 Rare Neuroimmune Disorders Symposium (RNDS), where we will learn about Acute Disseminated Encephalomyelitis (ADEM), Acute Flaccid Myelitis (AFM), MOG Antibody Disease (MOGAD), 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 neuroimmune 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 neuroimmune disorders, families, caregivers, and the medical professionals who have interest and are specializing in these disorders
Objectives
- Gather an understanding of the latest knowledge on the biology and causes of rare neuroimmune disorders (ADEM, AFM, MOGAD, NMOSD, ON, and TM) and how they relate to each other
- Learn about the latest medical and surgical strategies to manage the symptoms associated with these chronic disorders
- 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, MOGAD, NMOSD, ON, and TM, their families and caregivers. Medical professionals interested in these disorders are also welcome to attend. SRNA 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 SRNA programs during the two-day educational symposium.
Register
Register: Members
Register: Non-members
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, SRNA |
| 8:15-9:00 am | Living with a Rare Neuroimmune Disorder: Sharing Stories and Experiences Moderated Discussion with Members of our Community |
| 9:00-9:30 am | Stronger Together: Why Study These Disorders Collectively? Benjamin Greenberg, MD, MHS | University of Texas Southwestern and Children’s Medical Center |
| 9:30-12:15 am | Sessions on the Diagnosis and Treatment of Rare Neuroimmune 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 Disease Kyle Blackburn, MD | University of Texas Southwestern Medical Center |
| 11:15-11:45 am | Neuromyelitis Optica Spectrum Disorder Michael Levy, MD, PhD | Massachusetts General Hospital and Harvard Medical School |
| 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 Cynthia Wang, MD | University of Texas Southwestern Medical Center |
| 1:45– 2:15 pm | Vascular Myelopathies Carlos Pardo-Villamizar, MD | The Johns Hopkins University School of Medicine |
| 2:15-2:45 pm | Myelitis in Systemic Rheumatologic Conditions Michael Bradshaw, MD | Billing’s Clinic |
| 2:45-3:00 pm | Updates from SRNA SRNA 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 | Massachusetts General Hospital and Harvard Medical School Benjamin Greenberg, MD, MHS | University of Texas Southwestern and Children’s Medical Center Ankur Bhambri, DO | Alexion Pharmaceuticals Eliezer Katz, MD, FACS | Viela Bio |
| 4:20-4:50 pm | Small group workshop sessions (select one topic in each session) |
| SGWS I Finding Medical Care in Your Area Denise Maddox, RN | University of Texas Southwestern and Children’s Medical Center Katherine Treadaway, LCSW, MSCIR | University of Texas Southwestern Medical Center |
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| SGWS II IEPs and 504s Anjali Forber-Pratt, PhD | Vanderbilt University Lana Harder, PhD | University of Texas Southwestern and Children’s Medical Center |
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| 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 |
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| SGWS IV Sexual Dysfunction: Answers to the Questions You Were Afraid to Ask Philippines Cabahug, MD | Kennedy Krieger Institute |
Saturday, September 21, 2019
| 7:30-8:30 am | Breakfast |
| 8:30- 9:00 am | Rehabilitation and Rare Neuroimmune 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 Neuroimmune Disorders Genetic? Michael Levy, MD, PhD | Massachusetts General Hospital and Harvard Medical School |
| 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 |
| 10:45-11:00 am | Mid-morning Break |
| 11:00-11:30 am | What is Spasticity in Rare Neuroimmune Disorders? Philippines Cabahug, MD | 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? Carlos Pardo-Villamizar, MD | The Johns Hopkins University School of Medicine |
| 12:30-1:30 pm | Connect and Lunch |
| 1:30- 2:00 pm | The Central Nervous System (CNS) Connection: Understanding Depression, Cognitive Functioning, and Fatigue in CNS Demyelinating Disorders 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 | OhioHealth |
| 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 Neuroimmune Diagnoses Moderated Panel Discussion |
| 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 Neuroimmune 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 |
| 5:50-6:00 pm | Closing Remarks Carlos Pardo-Villamizar, MD | The Johns Hopkins University School of Medicine |
Sunday, September 22, 2019
2019 OH Walk-Run-N-Roll. For more information and registration click here.
Flyer
Download the flyer of the 2019 RNDS here.
Crowne Plaza, Columbus – Downtown
33 East Nationwide Boulevard
Columbus, OH, 43215
While the date has passed for the group rate, as long as the hotel has availability, you can call the main number (1 877 666 3243) and ask for in-house reservations to get SRNA-RNDS group rate.
Sponsors
