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2020 Virtual RNDS

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Schedule

· Stage
Hopin Tour
A quick tour of the Hopin platform. Learn how to navigate between areas of the event, chat with attendees, join break-out sessions, and visit the exhibitors.
Roberta Pesce
· Expo
Meet the Exhibitors
Take time to visit with our sponsors and exhibitors who helped make this conference possible and see what resources and information they have to offer.
· Stage
Welcome and Goals of the 2020 RNDS
SRNA's President and former SRNA Fellow Dr. Galli will begin the event by welcoming attendees and setting goals we aim to accomplish with this year’s RNDS.
Sanford Siegel Jonathan Galli
· Stage
What is Acute Flaccid Myelitis (AFM)?
Join us for a disorder-specific talk on AFM, including diagnostic criteria, acute treatments, and long-term effects.
Michael Sweeney
· Stage
What is Acute Disseminated Encephalomyelitis (ADEM)?
Join us for a disorder-specific talk on ADEM, including diagnostic criteria, acute treatments, and long-term effects.
M. Mateo Paz Soldan
· Stage
What is Transverse Myelitis (TM)?
Join us for a disorder-specific talk on TM, including diagnostic criteria, acute treatments, and long-term effects.
Stacey Clardy
· Stage
What is MOG Antibody Disease (MOGAD)?
Join us for a disorder-specific talk on MOGAD, including diagnostic criteria, acute treatments, and long-term effects.
Srav Vegunta
· Stage
What is Neuromyelitis Optica Spectrum Disorder and Optic Neuritis (NMOSD/ON)?
Join us for a disorder-specific talk on NMOSD, including diagnostic criteria, acute treatments, and long-term effects.
Jonathan Galli
· Sessions
Rare Neuroimmune Disorders Q&A Panel
Have a question about rare neuroimmune disorders? Ask the expert panelists the questions your physician(s) may not be able to answer and learn from others.
Stacey Clardy Jonathan Galli M. Mateo Paz Soldan Michael Sweeney Srav Vegunta
· Stage
Updates from SRNA Staff
What’s new at SRNA? Members of the SRNA staff will give an overview on the work we do year-round and updates from the past year.
GG deFiebre Jeremy Bennett
· Networking
Connection time
Do you ever wish you could meet someone with a similar diagnosis? Now is the time to connect with others with rare neuroimmune disorders and share experiences!
· Stage
Symptom Management - Managing Bowel, Bladder, and Sexual Dysfunction
Bladder, bowel, and sexual dysfunction are common symptoms. Learn about the different management strategies from the experts.
Janet Dean
· Stage
Symptom Management - Types of Pain and How to Treat Them
Pain comes in several forms. The speaker will discuss how to differentiate between types of pain and strategies for treating each type of pain.
Justin Abbatemarco
· Stage
Symptom Management | Managing Spasticity and Tone
Spasticity is a common symptom following a rare neuroimmune diagnosis. Learn about spasticity and how it relates to tone, along with management strategies.
Jason Poon
· Stage
Symptom Management | How to Manage Visual Issues
Some rare neuroimmune diseases can cause visual issues such as blurry vision and eye pain. During this talk, learn management strategies for visual symptoms.
Deb Nikkila
· Sessions
Symptom Management Q&A Panel
Rare neuroimmune disorders are complex and cause a variety of symptoms. During this Q&A, ask the medical professionals your questions about symptom management.
Janet Dean Jason Poon Deb Nikkila Justin Abbatemarco
· Expo
Meet the Exhibitors
Take time to visit with our sponsors and exhibitors who helped make this conference possible and see what resources and information they have to offer.
· Stage
COVID-19 and Rare Neuroimmune Disorders
The speaker will explain what we know so far about COVID-19 and rare neuroimmune disorders.
Benjamin Greenberg
· Stage
Updates in Rehabilitation in Rare Neuroimmune Disorders
Learn about the importance of rehabilitation and what it means for the long-term management of living with one these disorders.
Cristina  Sadowsky
· Stage
Long-term Treatments for Preventing Relapses
A relapse can cause further complications and damage to the CNS. Learn more about different treatment options for long-term prevention of relapses.
Michael Levy
· Stage
AFM Preparedness for 2020 and Beyond
Learn about the work that has been done over the last several years in AFM, as well as the preemptive measures medical experts and advocacy groups have taken.
Carlos A.  Pardo
· Sessions
Stress Management and Coping
Learn stress management and coping strategies during the pandemic including self-care, eliciting the relaxation response, and self-compassion
Katherine  Treadaway Ana Hernandez
· Sessions
Imaging in Rare Neuroimmune Disorders
Separate ticket required | Learn about latest updates in imaging techniques that can improve the future of diagnosing these disorders quickly and accurately.
J. Scott McNally
· Sessions
IEPs and 504s: How to Advocate for Your Child in School
In this session, parents and caregivers can learn how to advocate for their children’s needs within the education setting.
Christa Hutaff-Lee
· Sessions
Novel Therapeutic Strategies in NMOSD
Meet with representatives of pharmaceutical companies who are invested in the NMOSD community, share experiences, and ask questions.
Jo Dulay Ankur Bhambri Maureen Mealy
· Networking
Connection time
Do you ever wish you could meet someone who has your diagnosis? Now is the time to connect with others with rare neuroimmune disorders and share experiences!
· Sessions
Stress Management and Coping
Learn stress management and coping strategies during the pandemic including self-care, eliciting the relaxation response, and self-compassion
Katherine  Treadaway Ana Hernandez
· Sessions
Imaging in Rare Neuroimmune Disorders
Separate ticket required | Learn about latest updates in imaging techniques that can improve the future of diagnosing these disorders quickly and accurately.
J. Scott McNally
· Sessions
Novel Therapeutic Strategies in NMOSD
Meet with representatives of pharmaceutical companies who are invested in the NMOSD community, share experiences, and ask questions.
Jo Dulay Ankur Bhambri Maureen Mealy
· Networking
Connection time
Meet and connect with other attendees in the Networking area! You can also send out a private session invite if you wish to talk more!
· Stage
Closing remarks
We will close out the first Virtual Rare Neuroimmune Disorders Symposium with parting thoughts and how to apply what you’ve learned in the future.
Jonathan Galli
· Networking
Connection time
Do you ever wish you could meet someone with a similar diagnosis? Now is the time to connect with others with rare neuroimmune disorders and share experiences!

Speakers

Jo Dulay

Genentech

Sanford Siegel

President | Siegel Rare Neuroimmune Association (SRNA)

J. Scott McNally

University of Utah Health

Janet Dean

Kennedy Krieger Institute

Carlos A. Pardo

Johns Hopkins University School of Medicine

Ankur Bhambri

Alexion

Maureen Mealy

Viela Bio

Stacey Clardy

University of Utah Health

Benjamin Greenberg

University of Texas Southwestern

Jonathan Galli

University of Utah Health

Katherine Treadaway

University of Texas Southwestern

Ana Hernandez

Children's Medical Center Dallas

M. Mateo Paz Soldan

University of Utah Health

Jason Poon

University of Utah Health

Srav Vegunta

University of Utah Health

Justin Abbatemarco

University of Utah Health

Deb Nikkila

Maryland School for the Blind

Jeremy Bennett

Community Partnerships Manager | SRNA

GG deFiebre

Associate Director, Research and Education | SRNA

Christa Hutaff-Lee

University of Colorado School of Medicine

Cristina Sadowsky

Center for Spinal Cord Injury at the Kennedy Krieger Institute

Michael Sweeney

University of Louisville School of Medicine

Michael Levy

Massachusetts General Hospital

Roberta Pesce

Creative Director | SRNA

The event is over

Hosted by

SRNA | connect. care. cure. ™

The nonprofit advocating for people with rare neuroimmune disorders. Accelerating research for a cure.⁣⁣ ⁣⁣ ADEM | AFM | MOGAD | NMOSD | ON | TM⁣

Booths

SRNA | connect. care. cure. ™

Advocating for all those affected by rare neuroimmune disorders and accelerating research for a cure.

University of Utah Health

University of Utah Health Hospitals & Clinics

Alexion Pharmaceuticals, Inc.

Our work is guided by people living with rare and devastating diseases

Viela Bio

Dedicated to the development of novel, life changing medicines for patients with a wide range of autoimmune and severe inflammatory diseases

Kennedy Krieger Institute

International Center for Spinal Cord Injury

TSF for NMO

Illuminating the darkness of neuromyelitis optica

The MOG Project

Devoted to raising awareness, educating doctors, patients and caregivers, and advancing research to support those suffering from MOG-AD

The Guthy-Jackson Charitable Foundation

Dedicated to finding treatments & a cure for NMO

AFMA

Acute Flaccid Myelitis Association

CBJ Foundation

The CBJ Foundation raises awareness and research funds for NMOSD and related autoimmune diseases.

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