Loading Events

« All Events

2017 Rare Neuro-Immune Disorders Symposium

October 20 @ 7:00 am, EDT - October 21 @ 5:30 pm, EDT

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


Hosted by


Welcome to the 2017 Rare Neuro-Immune Disorders Symposium where we will learn about these rare neuro-immune disorders, and examine what the future will look like in five years for individuals and families affected by Acute Disseminated Encephalomyelitis (ADEM, Neuromyelitis Optica Spectrum Disorder (NMOSD), Optic Neuritis (ON), and Transverse Myelitis (including the subtype Acute Flaccid Myelitis).

This conference, hosted by The Transverse Myelitis Association (TMA), The Johns Hopkins Transverse Myelitis Center (JHTMC) and NMO Clinic, The University of Texas Southwestern Medical Center (UTSW) and Children’s Medical Center CONQUER Program, 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 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 knowledge to date on the biology and causes of rare neuro-immune disorders (TM, NMOSD, AFM, ADEM, and ON) and how they relate to each other
  2. Learn about the latest medical and surgical strategies to manage the symptoms associated with these chronic rare neuro-immune disorders
  3. Gain knowledge on current and future basic science 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, NMOSD, ON, and TM, including AFM, their families and caregivers. Medical professionals interested in these disorders are also welcome to attend.

2017 OHIO WALK-RUN-N-ROLL EVENT

The Transverse Myelitis Association is committed to building a supportive community of individuals diagnosed with ADEM, NMOSD, TM (including AFM) and raising awareness and funds to support research and education. The 2nd Annual OH Walk-Run-N-Roll Event will be held on Sunday, October 22, 2017 at Coffman Park Pavilion in Dublin, OH. The event is as an opportunity for our community to come together to share stories, experiences, and form lasting relationships all while increasing awareness of these rare neuro-immune disorders and raising funds that will allow the TMA to continue providing much needed educational programs like the RND Symposium and supporting research.

All are welcome to join.

Please indicate your interest to attend the walk when you register for the symposium, and we will send you an event registration confirmation with more details.

Click here for more information.


2017 RNDS Agenda

Friday October 20, 2017

7:00-9:00 am  Breakfast and Registration
9:00- 9:15 am   Welcome and Goals of the 2017 RNDS
Sandy Siegel, PhD | President, The TMA
9:15-10:15 am What Are Rare Neuro-Immune Disorders (RNDs)?
Brenda Banwell, MD | Children’s Hospital of Philadelphia
10:30-12:00 pm Workshop Sessions on Diagnosis and Treatment of RNDs (select one*)
12:00-1:00 pm Lunch
1:00-1:45 pm Recognizing and Treating Neuropathic Pain
Scott Newsome, DO | The Johns Hopkins University School of Medicine
1:45-2:15 pm Managing Fatigue in RNDs
Michael Sweeney, MD | University of Louisville
2:15-3:00 pm Bladder, Bowel, and Sexual Dysfunction in RNDs
Philippines Cabahug, MD | The Kennedy Krieger Institute
3:00-3:15 pm BREAK
3:15-4:00 pm Living with a Rare Neuro-Immune Disorder: Neuropsychological factors to consider
Lana Harder, PhD | University of Texas Southwestern and Children’s Medical Center
4:00- 4:45 pm Rehabilitation in RNDs
Daniel Becker, MD | The Johns Hopkins University School of Medicine and International Neurorehabilitation Institute
4:45-5:15 pm Open Forum for Questions and Answers
5:30-8:00 pm Dinner Reception

* Diagnosis and Treatment Workshop Sessions

Session 1:  Transverse Myelitis
Carlos Pardo-Villamizar, MD | The Johns Hopkins University School of Medicine
Allen DeSena, MD, MPH | Cincinnati Children’s 
Session 2:   Acute Flaccid Myelitis
Sarah Hopkins, MD, MSPH | Children’s Hospital of Philadelphia
Benjamin Greenberg, MD, MHS | University of Texas Southwestern and Children’s Medical Center
Session 3: Neuromyelitis Optica Spectrum Disorder and Optic Neuritis
Michael Levy, MD, PhD | The Johns Hopkins University School of Medicine
Maureen Mealy, RN, BSN, MSCN | The Johns Hopkins University School of Medicine
Session 4: Acute Disseminated Encephalomyelitis
Brenda Banwell, MD | Children’s Hospital of Philadelphia
Cynthia Wang, MD | University of Texas Southwestern Medical Center

Saturday October 21, 2017

7:30-9:00 am  Breakfast
9:00- 10:15 am   Small group workshop sessions I (select one topic in each session*)
10:15-10:45 am Break
10:45-12:00 pm Small group workshop sessions II (select one topic in each session*)
12:00-1:00 pm Lunch
1:00-3:00 pm Research and Future of Rare Neuro-immune Disorders
3:00-3:20 pm Break
3:20-5:15 pm Research and Future of Rare Neuro-immune Disorders
5:15-5:30 Closing

* Small Group Workshop Sessions

Session 1:  Depression and Cognitive Dysfunction
Lana Harder, PhD | University of Texas Southwestern and Children’s Medical Center, Dallas
Cole Hague, MS | University of Texas Southwestern
Session 2:   Bowel, Bladder, and Sexual Dysfunction
Philippines Cabahug, MD | The Kennedy Krieger Institute
Paula Hardeman, MPAS, PA-C | University of Texas Southwestern Medical Center
Session 3: Rehabilitation
Daniel Becker, MD | The Johns Hopkins University School of Medicine and International Neurorehabilitation Institute
Janet Dean, MS, RN, CRRN, CRNP, CRND | Kennedy Krieger Institute
Session 4: Managing your Care and Support for Caregivers
Katherine Treadaway, LCSW, MSCIR | University of Texas Southwestern Medical Center
Sandy Siegel, PhD | The Transverse Myelitis Association
Gabrielle deFiebre, MPH | The Transverse Myelitis Association
Session 5: Neuropathic Pain
Scott Newsome, DO | The Johns Hopkins University School of Medicine
Maureen Mealy, RN, BSN, MSCN | Johns Hopkins Transverse Myelitis Center and Neuromyelitis Optica Clinic
Session 6: Alternative therapies
Benjamin Greenberg, MD, MHS | University of Texas Southwestern and Children’s Medical Center
Allen DeSena, MD, MPH | Cincinnati Children’s
Session 7: Transition from Adolescents to young adults
Anjali Forber-Pratt, PhD | Vanderbilt University
Audrey Keech RN, BSN, MSCN, CRND | University of Texas Southwestern Medical Center
Session 8: Pediatric-specific issues
Cynthia Wang, MD | University of Texas Southwestern Medical Center
Sarah Hopkins, MD, MSPH | Children’s Hospital of Philadelphia
Michael Sweeney, MD | University of Louisville

Registration Fees

Discounted fees are available for members of The TMA. Please note that membership to the TMA is free. We encourage all individuals diagnosed with a rare neuro-immune disorder, caregivers, relatives and medical professionals to sign up here.

* Children under 12 years of age can attend the symposium at no cost

Hotel Info

Hilton Columbus at Easton
Easton Town Center
3900 Chagrin Dr
Columbus, OH 43219

5.3 miles from Port Columbus International Airport

Complimentary shuttle from airport to hotel

A limited block of accessible and regular rooms is available at a nightly rate of $189 plus 17.5% taxes until September 19, 2017. Reservations require a first night’s room and tax deposit with each individual reservation. If guests wish to upgrade to a standard Easton view room, they can do so for an additional $10.00 per room, per night. Guests can also upgrade to the Executive Floor for an additional $30.00 per room, per night. Individuals cancelling their reservations must do so by 4pm the day prior to their scheduled arrival date, or it will result in a charge of one night’s room and tax to the individual’s credit card.

Reservations must be made by calling the hotel directly at 614-414-5000 and asking for the “TMA Symposium” room block rate, or through the online group reservations link.

Sponsorship
Contact Us

info@myelitis.org
+1 (855) 380-3330

Timi Schrumpf
tschrumpf@myelitis.org

Participate in Research

For those interested in participating in research opportunities while at the 2017 RNDS, below are five studies that have been approved by an Institutional Review Board for the protection of human subjects.

For more information and questions, please contact The TMA’s Associate Director of Research and Education, GG deFiebre, at gdefiebre@myelitis.org.

Please note: If you choose to participate in both the Johns Hopkins studies and the UTSW study, you will be required to get two blood samples drawn, one on the first day of the Symposium, and one on the last day.

  1. Johns Hopkins/Guthy Jackson NMO repository. If you or your family member has NMOSD, TM, ADEM or ON, you can donate your blood to fuel research to find cures. Samples will be shared with the international NMO scientific community. This study requires 10 tubes of blood and a future phone call to collect clinical information.
  1. Johns Hopkins TM Genetics study. We have developed a genetic test for familial TM. If you or your family member has TM, and would like to be tested, you can contribute to this study. This study requires 1 saliva sample and a future phone call to collect clinical information (if tested positive).
  1. Johns Hopkins Anti-MOG study. Anti-MOG antibodies have been discovered in NMOSD and ADEM, but the relevance of this antibody needs to be investigated. If you would like to be tested for the anti-MOG antibody, this study requires 1 tube of blood and a future phone call to collect clinical information (if tested positive).
  1. The UTSW CONQUER Longitudinal Study. This study is enrolling patients with TM and NMOSD in a research project to understand both causes and outcomes of these conditions. If you agree to participate, you will be asked to provide medical records, complete questionnaires, provide MRIs, and blood samples. You will also be asked to provide updated data and samples on a regular basis.
  1. The TMA Registry. The TMA registry is a survey that has been designed to learn more about the natural history of rare neuro-immune disorders, treatments and outcomes using standardized tools. If you would like to participate, you will be asked to fill out this survey online.
  1. The APERTURE Study. To help address gaps in our understanding about ADEM, this study will examine the long-term outcomes of individuals with ADEM. Individuals between ages 0-64 with the initial diagnosis of ADEM are welcome to participate. Participants will be asked to provide medical records, MRI studies, complete questionnaires, and in some cases, neuropsychological testing.

Video recordings of all presentations will be available for viewing on our website.


SPONSORS



Think people should hear about this?

Details

Start:
October 20 @ 7:00 am, EDT
End:
October 21 @ 5:30 pm, EDT
Event Category:

Venue

Hilton Columbus at Easton
3900 Chagrin Dr
Columbus, OH 43219 United States
+ Google Map