2024RNDS
October 18-20, 2024
Resource Center
Day 1
October 18 | 9:00 AM CT
Welcome
Sandy Siegel, PhD and Benjamin Greenberg, MD, MHS
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October 18 | 9:20 AM CT
What’s my Diagnosis? Community Members Share their Diagnostic Journey
GG deFiebre, PhD and Community Presenters, Angela Jackson, Andrew Jopson, Ashley Harrington, Lyd Lacey, and Andreas Melitsanopoulos
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October 18 | 10:20 AM CT
What’s my Diagnosis? Physician Panel Discussion Based on the Community Panel Presentations
Carlos A. Pardo, MD, Benjamin Greenberg, MD, MHS, Michael Levy, MD, PhD, Tammy Smith, MD, PhD, Leslie Benson, MD, and Dean Wingerchuk, MD
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October 18 | 11:00 AM CT
Rare Neuroimmune Disorders: Diagnostic Criteria
Kyle Blackburn, MD and Shruti Mahale
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October 18 | 11:30 AM CT
Plasma Exchange for Acute Inflammatory Demyelination: How We Got Here and Where to Next?
Brian Weinshenker, MD
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October 18 | 11:55 AM CT
A Conversation: How Do I Identify a Relapse?
Cynthia Wang, MD and Rebecca Salky, RN
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October 18 | 1:30 PM CT
In-Person Breakout Session I: NMOSD
Dean Wingerchuk, MD, Tammy Smith, MD, PhD, and Peter Sguigna, MD
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October 18 | 1:30 PM CT
In-Person Breakout Session II: MOGAD and ADEM
Michael Levy, MD, PhD, Grace Gombolay, MD, and Teri Schreiner, MD, MPH
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October 18 | 1:30 PM CT
In-Person Breakout Session III: TM and AFM
Leslie Benson, MD, Carlos A. Pardo, MD, and Benjamin Greenberg, MD, MHS
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October 18 | 1:30 PM CT
Hybrid Session: Care for the Caregiver
Paula Hardeman, MPAS, PA-C and Jeff Harrington
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October 18 | 3:15 PM CT
Management of Neuropathic Pain: Medical and Surgical Options
Paula Barreras Cortes, MD and Michael Levy, MD, PhD
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October 18 | 3:45 PM CT
Management of Spasticity
Cristina Sadowsky, MD
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October 18 | 4:15 PM CT
Management of Sexual Dysfunction
Frederick W. Foley, PhD
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October 18 | 4:45 PM CT
Management of Bladder and Bowel Dysfunction
Philippines Cabahug, MD
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October 18 | 5:30 PM CT
Keynote
Sandy Siegel, PhD and Doug Kerr, MD, PhD
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Day 2
October 19 | 9:00 AM CT
Synaptic Dysfunction in Rare Neuroimmune Disorders
Haiwen Chen, MD, PhD
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October 19 | 9:20 AM CT
Advancements in ADEM and Optic Neuritis Treatment with TRE-515
Kenneth Schultz, MD
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October 19 | 9:40 AM CT
Cannabis Use in Rare Neuroimmune Disorders
Melanie Delgado and Anastasia Vishnevetsky, MD, MPH
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October 19 | 10:00 AM CT
Social Determinants of Health in TM
Ka-Ho Wong, MBA
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October 19 | 10:35 AM CT
Clinical Analysis of Children Presenting with ADEM with or without MOG-IgG
Linda Nguyen, MD
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October 19 | 11:15 AM CT
The Mind-Body Connection in Rare Neuroimmune Conditions: Exploring the Relationship Between Mental Health, Fatigue, and Cognition
Lana Harder, PhD, ABPP and Natalie Escalante, PsyD
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October 19 | 11:45 AM CT
Rehabilitation Strategies
Rebecca Whitney, RN, Cristina Sadowsky, MD, Heakyung Kim, MD, Clarice Sinn, DO, and Philippines Cabahug, MD
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October 19 | 1:30 PM CT
Management of Visual Symptoms
Peter Sguigna, MD and Kory S. Cummings, OD
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October 19 | 2:00 PM CT
Fatigue and Rare Neuroimmune Disorders
Bardia Nourbakhsh, MD and Julia Lefelar
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October 19 | 2:30 PM CT
How Do Advocacy and Awareness Organizations Support our Community?
Leah Campbell, Julia Lefelar, Jacinta Behne, and Jasmine Patel, MPH
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October 19 | 2:50 PM CT
Aging: What to Expect?
Carlos A. Pardo, MD and Michael Levy, MD, PhD
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October 19 | 3:30 PM CT
Disability: Adapting to and Embracing Disability
Cyrena Gawuga, PhD, MSW
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October 19 | 4:00 PM CT
Adaptive Tools and Resources
Sandy Hanebrink, OTR/L, CLP, FAOTA
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October 19 | 4:30 PM CT
Community Perspectives Panel: Navigating Work, Travel, Setting Boundaries, and More
Benjamin Greenberg, MD, MHS, Philip Rive, Rebecca Salky, RN, and Leah Campbell
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Day 3
October 20 | 1:00 PM CT
Understanding Genetics of Rare Neuroimmune Disorders
Monique Anderson MD, PhD
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October 20 | 1:20 PM CT
Update on the Q-Cells Study
Benjamin Greenberg, MD, MHS
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October 20 | 1:40 PM CT
NMOSD and MOGAD Clinical Trials
Michael Levy, MD, PhD
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October 20 | 2:00 PM CT
Advances in Immunotherapies and Tolerance
Michael Yeaman, PhD
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October 20 | 2:30 PM CT
Open Q&A
Darina Dinov, DO, Denise Maddox, RN, Cynthia Wang, MD, and Sydney Lee, MD, FRCPC
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Resource Center
| Talk | Speaker | Institution | |||
| Welcome | Sandy Siegel, PhD Benjamin Greenberg, MD, MHS | SRNA University of Texas Southwestern | 1:00 PM | PT | Watch Video and Download Transcript |
| Panel presentations on diagnosis and treatment of ADEM, AFM, MOGAD, NMOSD, and TM | Benjamin Greenberg, MD, MHS Grace Gombolay, MD Michael Levy, MD, PhD Carlos A. Pardo, MD Eoin P. Flanagan, MD Community Presenters | University of Texas Southwestern Emory University SOM/Children’s Healthcare of Atlanta Massachusetts General Hospital Johns Hopkins University Mayo Clinic | 1:15 | PT | Watch Video and Download Transcript |
| Talk | Speaker | Institution | |||
| Management of neuropathic pain | Ram Narayan, MD | Barrow Neurological Institute | 9:00 AM | PT | Watch Video and Download Transcript Download Slides |
| What are the long-term treatments for NMOSD and MOGAD? | Anastasia Vishnevetsky, MD | Massachusetts General Hospital | 9:30 AM | PT | Watch Video and Download Transcript Download Slides |
| Learn about new clinical trials in MOGAD and NMOSD | Michael Levy, MD, PhD | Massachusetts General Hospital | 10:00 AM | PT | Watch Video and Download Transcript Download Slides |
| Management of spasticity | Daniel Becker, MD | International Neurorehabilitation Institute | 11:00 AM | PT | Watch Video and Download Transcript Download Slides |
| Research updates on management of neuropathic pain and spasticity | Michael Levy, MD, PhD | Massachusetts General Hospital | 11:30 AM | PT | Watch Video and Download Transcript Download Slides |
| Respiratory complications of Acute Flaccid Myelitis | Keith Van Haren, MD | Stanford University | 12:00 PM | PT | Watch Video and Download Transcript Download Slides |
| Transitioning from hospital to home | TRACK 1 | Janet Dean, MS, RN, CRRN, CRNP Paul Garrett | Kennedy Krieger Institute | 1:30 PM | PT | Watch Video and Download Transcript Download Slides |
| Building a health care team | TRACK 2 | Grace Gombolay, MD | Emory University SOM/Children’s Healthcare of Atlanta | 1:30 PM | PT | Watch Video and Download Transcript |
| Pediatric Mental Health | TRACK 3 | Camille Wilson, MD | Nationwide Children's Hospital | 1:30 PM | PT | Watch Video and Download Transcript Download Slides |
| Early rehabilitation strategies | TRACK 1 | Rajashree Srinivasan, MD | UT Southwestern Medical Center | 1:50 PM | PT | Watch Video and Download Transcript Download Slides |
| Therapy for retaining function | TRACK 2 | Dennis Tom-Wigfield, PT, DPT | Kennedy Krieger Institute | 1:50 PM | PT | Watch Video and Download Transcript Download Slides |
| Transitioning from childhood to adolescence to adulthood | TRACK 3 | Melissa Hutchinson, MD, MA | Nationwide Children's Hospital | 1:50 PM | PT | Watch Video and Download Transcript Download Slides |
| How do I know if I am having a relapse? | Benjamin Greenberg, MD, MHS | UT Southwestern Medical Center | 2:40 PM | PT | Watch Video and Download Transcript Download Slides |
| An open moderated panel session to discuss trending topics in rare neuroimmune disorders | Benjamin Greenberg, MD, MHS Carlos A. Pardo, MD Michael Levy, MD, PhD Eoin P. Flanagan, MD Grace Gombolay, MD | University of Texas Southwestern Johns Hopkins University Massachusetts General Hospital Mayo Clinic Emory University SOM/Children’s Healthcare of Atlanta | 3:30 pm | PT | Watch Video and Download Transcript |
| Talk | Speaker | Institution | |||
| Impact of rare neuroimmune disorders on cognition, depression, and quality of life | Lana Harder, PhD, ABPP | UT Southwestern Medical Center & Children’s Medical Center Dallas | 9:00 AM | PT | Watch Video and Download Transcript |
| How to cope with grief, anxiety, and loss? How to talk to others about my diagnosis? | Christa Hutaff-Lee, PhD | Children’s Colorado | 9:30 AM | PT | Watch Video and Download Transcript Download Slides |
| Research Updates: Tele-neuropsychology and Neuropsychological Outcomes Associated with MOGAD | Lana Harder, PhD, ABPP | UT Southwestern Medical Center & Children’s Medical Center Dallas | 10:00 AM | PT | Watch Video and Download Transcript |
| Bladder, bowel, and sexual dysfunction | Philippines Cabahug, MD | Kennedy Krieger Institute | 11:00 AM | PT | Watch Video and Download Transcript Download Slides |
| Adaptive tools and technology for improved quality of life | Sandy Hanebrink, OTR/L, CLP, FAOTA | Touch the Future/ReBoot, Inc. | 11:45 AM | PT | Watch Video and Download Transcript Download Slides |
| Disability: Adapting to and embracing disability | GG deFiebre, PhD Janelle Hewelt Cyrena Gawuga Paul Garrett | SRNA | 1:30 PM | PT | Watch Video and Download Transcript |
| Know RND and the CORE TM Registry | Kyle Blackburn, MD | UT Southwestern Medical Center | 2:20 PM | PT | Watch Video and Download Transcript Download Slides |
| Association of rare variants in genes of immune regulation with pediatric autoimmune CNS disease | Saba Jafarpour, MD | Children’s Hospital Los Angeles | 2:40 PM | PT | Watch Video and Download Transcript Download Slides |
| APERTURE: New Insights on ADEM | Cynthia Wang, MD | UT Southwestern Medical Center | 3:20 PM | PT | Watch Video and Download Transcript Download Slides |
| Q&A and Closing Remarks | Carlos A. Pardo, MD Melissa Hutchinson, MD Kyle Blackburn, MD Janet Dean, MS, RN, CRRN, CRNP Courtney R. Porter Cynthia Wang, MD | Johns Hopkins University Nationwide Children's Hospital Southwestern Medical Center Kennedy Krieger Institute Kennedy Krieger Institute UT Southwestern Medical Center | 3:40 PM | PT | Watch Video and Download Transcript |
Resource Center
| Talk | Speaker | Institution | |||
| Welcome | Sandy Siegel, PhD
Benjamin Greenberg, MD | Siegel Rare Neuroimmune Association
University of Texas Southwestern | 9:00 AM | CT | Watch Video Download Transcript |
| What’s my Diagnosis? Community Members Share their Diagnostic Journey | GG deFiebre, PhD
Angela Jackson Andrew Jopson Ashley Harrington Lyd Lacey Andreas Melitsanopoulos | Siegel Rare Neuroimmune Association
Community Members | 9:20 AM | CT | Watch Video Download Transcript |
| What’s my Diagnosis? Physician Panel Discussion Based on the Community Panel Presentations | Carlos A. Pardo, MD
Benjamin Greenberg, MD Michael Levy, MD, PhD Tammy Smith, MD Leslie Benson, MD Dean Wingerchuk, MD | Johns Hopkins University
University of Texas Southwestern Massachusetts General Hospital University of Utah Boston Children’s Hospital Mayo Clinic | 10:20 AM | CT | Watch Video Download Transcript |
| Rare Neuroimmune Disorders: Diagnostic Criteria | Kyle Blackburn, MD
Shruti Mahale | University of Texas Southwestern
University of Texas Southwestern | 11:00 AM | CT | Watch Video Download Transcript Download Slides |
| Plasma Exchange for Acute Inflammatory Demyelination: How We Got Here and Where to Next? | Brian Weinshenker, MD | UVA Health | 11:30 AM | CT | Watch Video Download Transcript |
| A Conversation: How Do I Identify a Relapse? | Cynthia Wang, MD
Rebecca Salky, RN | University of Texas Southwestern
Massachusetts General Hospital | Community member | 11:55 AM | CT | Watch Video Download Transcript |
| Breakout Session I: NMOSD | Dean Wingerchuk, MD
Tammy Smith, MD, PhD Peter Sguigna, MD | Mayo Clinic
University of Utah University of Texas Southwestern | 1:30 PM | CT | Watch Video Download Transcript Download Slides |
| Breakout Session II: MOGAD and ADEM | Michael Levy, MD, PhD
Grace Gombolay, MD Teri Schreiner, MD | Massachusetts General Hospital
Emory University SOM/Children’s Healthcare of Atlanta University of Colorado | 1:30 PM | CT | Watch Video Download Transcript Download Slides |
| Breakout Session III: TM and AFM | Leslie Benson, MD
Carlos A. Pardo, MD Benjamin Greenberg, MD, MHS | Boston Children’s Hospital
Johns Hopkins University University of Texas Southwestern | 1:30 PM | CT | Watch Video Download Transcript |
| Hybrid Session: Care for the Caregiver | Paula Hardeman, MPAS, PA-C
Jeff Harrington | University of Texas Southwestern
Community member | 1:30 PM | CT | Watch Video Download Transcript |
| Management of Neuropathic Pain: Medical and Surgical Options | Paula Barreras Cortes, MD
Michael Levy, MD, PhD | Cedars Sinai
Massachusetts General Hospital | 3:15 PM | CT | Watch Video Download Transcript |
| Management of Spasticity | Cristina Sadowsky, MD | Kennedy Krieger Institute | 3:45 PM | CT | Watch Video Download Transcript Download Slides |
| Management of Sexual Dysfunction | Frederick W. Foley, PhD | Yeshiva University | 4:15 PM | CT | Watch Video Download Transcript |
| Management of Bladder and Bowel Dysfunction | Philippines Cabahug, MD | Kennedy Krieger Institute | 4:45 PM | CT | Watch Video Download Transcript Download Slides |
| Keynote | Sandy Siegel, PhD
Doug Kerr, MD | Siegel Rare Neuroimmune Association
Dyne Therapeutics | 5:30 PM | CT | Watch Video Download Transcript |
| Talk | Speaker | Institution | |||
| Synaptic Dysfunction in Rare Neuroimmune Disorders | Haiwen Chen, MD, PhD | Johns Hopkins University | 9:00 AM | CT | Watch Video Download Transcript Download Slides |
| Advancements in ADEM and Optic Neuritis Treatment with TRE-515 | Kenneth Schultz, MD | Trethera | 9:20 AM | CT | Watch Video Download Transcript Download Slides |
| Cannabis Use in Rare Neuroimmune Disorders | Melanie Delgado
Anastasia Vishnevetsky, MD, MPH | Massachusetts General Hospital | 9:40 AM | CT | Watch Video Download Transcript Download Slides |
| Social Determinants of Health in TM | Ka-Ho Wong, MBA | University of Utah | 10:00 AM | CT | Watch Video Download Transcript |
| Clinical Analysis of Children Presenting with ADEM with or without MOG-IgG | Linda Nguyen, MD | University of Texas Southwestern | 10:35 AM | CT | Watch Video Download Transcript Download Slides |
| Muscle Evoked Potential Operant Conditioning (EPOC) to Improve Sensorimotor Functions in People with Spinal Cord Lesions | Aiko Thompson, PhD | Medical University of South Carolina | 10:55 AM | CT | Watch Video Download Transcript Download Slides |
| The Mind-Body Connection in Rare Neuroimmune Conditions: Exploring the Relationship Between Mental Health, Fatigue, and Cognition | Lana Harder, PhD, ABPP
Natalie Escalante, PsyD | University of Texas Southwestern | Children’s Medical Center Dallas
Children’s Medical Center Dallas | 11:15 AM | CT | Watch Video Download Transcript Download Slides |
| Rehabilitation Strategies | Moderated by Rebecca Whitney, RN
Cristina Sadowsky, MD Heakyung Kim, MD Clarice Sinn, DO Philippines Cabahug, MD | Siegel Rare Neuroimmune Association
Kennedy Krieger Institute University of Texas Southwestern University of Kentucky Kennedy Krieger Institute | 11:45 AM | CT | Watch Video Download Transcript Download Slides |
| Management of Visual Symptoms | Peter Sguigna, MD
Kory S. Cummings, OD | University of Texas Southwestern
Private Practice in Fort Worth, TX | 1:30 PM | CT | Watch Video Download Transcript Download Slides |
| Fatigue and Rare Neuroimmune Disorders | Bardia Nourbakhsh, MD
Julia Lefelar | Johns Hopkins University
The MOG Project | Community member | 2:00 PM | CT | Watch Video Download Transcript Download Slides |
| How Do Advocacy and Awareness Organizations Support our Community? | Leah Campbell
Julia Lefelar Jacinta Behne Jasmine Patel, MPH | Community member
The MOG Project Guthy-Jackson Charitable Foundation The Sumaira Foundation | 2:30 PM | CT | Watch Video Download Transcript |
| Aging: What to Expect? | Carlos A. Pardo, MD
Michael Levy, MD, PhD | Johns Hopkins University
Massachusetts General Hospital | 2:50 PM | CT | Watch Video Download Transcript |
| Disability: Adapting to and Embracing Disability | Cyrena Gawuga, PhD, MSW | Community member | 3:30 PM | CT | Watch Video Download Transcript |
| Adaptive Tools and Resources | Sandy Hanebrink, OTR/L, CLP, FAOTA | Touch the Future, Inc. | Community member | 4:00 PM | CT | Watch Video Download Transcript Download Slides |
| Community Perspectives Panel: Navigating Work, Travel, Setting Boundaries, and More | Benjamin Greenberg, MD, MHS
Philip Rive Rebecca Salky, RN Leah Campbell Community member | University of Texas Southwestern
Community member Massachusetts General Hospital | Community member Community member | 4:30 PM | CT | Watch Video Download Transcript |
| Talk | Speaker | Institution | |||
| Understanding Genetics of Rare Neuroimmune Disorders | Monique Anderson MD, PhD | Massachusetts General Hospital | 1:00 PM | CT | Watch Video Download Transcript Download Slides |
| Update on the Q-Cells Study | Benjamin Greenberg, MD, MHS | University of Texas Southwestern | 1:20 PM | CT | Watch Video Download Transcript Download Slides |
| NMOSD and MOGAD Clinical Trials | Michael Levy, MD, PhD | Massachusetts General Hospital | 1:40 PM | CT | Watch Video Download Transcript Download Slides |
| Advances in Immunotherapies and Tolerance | Michael Yeaman, PhD | UCLA | 2:00 PM | CT | Watch Video Download Transcript |
| Open Q&A | Darina Dinov, DO
Denise Maddox, RN Cynthia Wang, MD Sydney Lee, MD, FRCPC | University of Texas Southwestern
University of Texas Southwestern University of Texas Southwestern University of Utah | 2:30 PM | CT | Watch Video Download Transcript |
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