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 Neuroimmune Disorders Symposium where we will learn about these rare neuroimmune 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 Siegel Rare Neuroimmune Association (SRNA), 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 neuroimmune disorders, families, caregivers, and the medical professionals who have interest and are specializing in these disorders.

OBJECTIVES

Gather an understanding of the knowledge to date on the biology and causes of rare neuroimmune disorders (TM, NMOSD, AFM, ADEM, and ON) and how they relate to each other
Learn about the latest medical and surgical strategies to manage the symptoms associated with these chronic rare neuroimmune disorders
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 Siegel Rare Neuroimmune 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 2^nd 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 neuroimmune disorders and raising funds that will allow SRNA 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.

Online registration for the 2017 RNDS has closed. On-site registration will be possible at the event.

Video recordings of all presentations are available here.

Download the 2017 RNDS Agenda

Registration Fees

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

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

Hotel

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 (please note, shuttle is NOT wheelchair accessible)

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 “SRNA Symposium” room block rate, or through the online group reservations link. Please be sure to indicate that you need an accessible room if needed.

Transportation

Sponsorship

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 SRNA’s Associate Director of Research and Education, GG deFiebre, at [email protected].

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.

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).
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).
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.
SRNA Registry. SRNA registry is a survey that has been designed to learn more about the natural history of rare neuroimmune disorders, treatments and outcomes using standardized tools. If you would like to participate, you will be asked to fill out this survey online.
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.

2017 Rare Neuroimmune Disorders Symposium

October 20, 2017 @ 7:00 am - October 21, 2017 @ 5:30 pm EDT

OBJECTIVES

AUDIENCE

2017 OHIO WALK-RUN-N-ROLL EVENT

Online registration for the 2017 RNDS has closed. On-site registration will be possible at the event.

SPONSORS

Details

Venue

Details

Venue

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