I am proud to present to you the Siegel Rare Neuroimmune Association Annual Report for 2019. Please review the report carefully. It is important that you understand the work your organization performs on your behalf. It is also critical that we are accountable to our community that so generously supports this work. We are always mindful that none of this work gets done without the support of our members and sponsors.
The name of our organization changed in 2019 to finally reflect the advocacy work we’ve been doing almost since our inception. Our membership has always included individuals and their families diagnosed with acute disseminated encephalomyelitis, acute flaccid myelitis, MOG antibody disease, neuromyelitis optica spectrum disorder, optic neuritis, and transverse myelitis. Our name now reflects the reality that we are stronger and more inclusive and more effective together. We are the Siegel Rare Neuroimmune Association.
I am honored and humbled that our name recognizes the contributions Pauline and I have made for more than twenty-five years. I also recognize that our accomplishments are the result of the efforts of the many volunteers who have been doing this work from across the country and around the world; beginning with Deanne, Paula, Debbie, Jim, and Stephen.
Our name changed; our work did not. Our mission has always been to connect people, care for those who are affected, and to further our work of finding a cure and ending rare neuroimmune disorders for good. I am so proud of our organization and our staff. This annual report describes the many achievements in research, education, and support that took place in 2019 through the hard work and dedication of our staff and the wonderful volunteers from our community.
While we’ve made great strides over the years, we recognize that we are on a journey. We are always listening to you and we are learning from you about your needs and your hopes for the future. We are always looking forward and are committed to making a positive difference in your lives.
These are the most challenging times. We will provide you with the best information possible to help you navigate the critical public health issues that threaten our community, our nation, and the world. Please review the information on our website regularly as we strive to provide you with the most accurate and timely information available. Please stay informed. Please stay safe.
Please take care of yourselves and each other.
The Siegel Rare Neuroimmune Association (SRNA) advocates for, supports and educates individuals and their families diagnosed with acute disseminated encephalomyelitis, acute flaccid myelitis, MOG antibody disease, neuromyelitis optica spectrum disorder, optic neuritis, and transverse myelitis, and accelerates and invests in scientific research, therapy development and training of clinician-scientists dedicated to these disorders. Our end goal is to improve the quality of life of individuals with rare neuroimmune disorders and redouble our commitment to finding a cure. Together.
Being diagnosed with a rare neuroimmune disorder can be isolating. These disorders are rare, and many people in our community have never met someone else with one of these disorders in person. Our mission at SRNA is to connect people with ADEM, AFM, MOGAD, NMOSD, ON, and TM so that they will feel like a part of an understanding community. We bring people together through our Walk-Run-N-Roll events, where individuals can bring their friends and families together and raise awareness for these disorders. We also bring people together through our Support Group Network, where 28 volunteers lead support groups and serve as ambassadors of SRNA’s mission in their local communities. We connect people throughout the world by sharing stories through our Hope Ambassador program and our Blog. Finally, our annual Quality of Life Family Camp brings together children diagnosed with rare neuroimmune disorders, their families, and medical specialists for an unforgettable camp experience at the Center for Courageous Kids.
Advocacy is a joint effort. It requires a dedicated community of people that believes things can be different, that change is possible. We at SRNA want to enable this positive change by empowering our community members to become better advocates for themselves and those around them. Change begins when we speak up and make our voices heard. One of our main awareness initiatives, SRNA’s Walk-Run-N-Rolls, started when Colleen Spaeth, our community leader in New Jersey, led the first walk in 2012 with her family to bring together the local community to raise awareness, meet others, and share experiences. We have learned about compassion, leadership, empathy, and resilience from the 40 Walk-Run-N-Rolls that have taken place since 2012. In 2019, our community leaders led Walk-Run-N-Roll events in six states (AZ, DC, IL, MD, OH, and PA) and raised more than $50,000 to support us in our mission. We have shared stories, learned about scientific advances, but most importantly, looked forward to these events as a way to become better advocates for ourselves and our community.
At a Glance
SRNA travelled to the Kennedy Space Center Visitor Complex in Merritt Island, FL for our 2019 25th Anniversary Gala and Dinner Experience. With over 400 attendees, the Gala raised over $100,000 to help fund research on rare neuroimmune disorders and programs that help individuals who are diagnosed with these disorders. The evening was an out-of-this-world experience as guests ate, drank, and raised funds to help improve the future for those diagnosed with ADEM, AFM, MOGAD, NMOSD, ON, and TM.
Recovery from a rare neuroimmune disorder is often a long and difficult process. From the individual experiencing the changes and frustration with their body, a sense of grief over what they can no longer do the same as before, to the family and loved ones feeling helpless and uncertain how to connect with someone they love so much, it can be so isolating. Connecting with other individuals diagnosed with the disorder, or caregivers and loved ones who understand the shock and overwhelming sense everyday may bring living with a diagnosis, to relating to the long hours of physical therapy, we offer the opportunity for personal connections. And connections in 2019 didn’t fall short. Our Support Group Network has grown to 35 national and international support group leaders. Being able to speak or correspond with someone who truly empathizes with all the nuances these disorders can bring to a person or family can mean a day, a moment, is easier to see through – even the celebratory ones. A new friendship or learning of a new resource from a personal connection or support group meeting can offer a shining light of hope to someone, reassuring them that they’re not alone. We’re in this together.
At a Glance
new Support Groups in 2019
support group meetings held in 2019
people signed up to attend a support group meeting in 2019
I became a support group leader because I enjoy giving back to my community. It gives me extreme gratitude in connecting people with each other and providing important resources.
My reason for getting involved with the Phoenix support group was easy, I continue to meet some of the most courageous people on this planet. In our community we have folks that have overcome more adversity in a matter of months then most people will in their lifetime. For me, bringing the group together allows us to share willingly and to be listened to without judgment. We can’t change the past but we can make a difference by supporting one another today.
I got involved with SRNA so I could form a community in San Diego where I had recently relocated to. My boyfriend, Jay, and I wanted to ensure people had the ability to meet with others with similar stories so we could all connect and feel a little less alone. My favorite part of being a SGL is getting to meet so many others with rare neuroimmune disorders and having the chance to be more active with SRNA and to continue raising awareness!
Each month, through our Hope Ambassador program, we share the story of a member of our community who has been affected by a rare neuroimmune disorder. Each story helps connect our community through shared experiences and raises awareness for these disorders. Our Hope Ambassadors serve as beacons of hope for the future and provide our community comfort in knowing that they are not alone. We have over 120 hope ambassadors diagnosed with ADEM, AFM, MOGAD, NMOSD, ON, and TM.
We keep our members up-to-date with our weekly blog posts featuring stories from our community, research summaries, event recaps, SRNA news, and more. In 2019, we posted 55 posts to our blog and had over 1,800 subscribers.
At a Glance
blog posts in 2019
Another steamy southern summer day greeted our families and volunteers at the SRNA 2019 Quality of Life Family Camp at The Center for Courageous Kids in Scottsville, KY, on July 27, 2019. Families of children diagnosed with a rare neuroimmune disorder represented our community as we came together from across the country. We gathered for five days and created new connections, caught up with friends from previous years, learned from and supported one another, and experienced joy as a community. For many, it was the last summer vacation before school started and a chance to catch-up with old friends. For others, it was a new opportunity to see what this camp is all about after an overwhelming period of significant life changes their family never asked to experience. Medical professional volunteers, including some of our James T. Lubin Fellows, joined us for educational sessions with parents to offer their knowledge and expertise in the rare neuroimmune disorders but also to learn from our families; their needs, goals, questions, and to understand what it means to live as a family, as a child, with one of these disorders. Although education and learning are a vital part of camp, the overwhelming purpose is to allow kids, their siblings, the entire family to just enjoy themselves in an accessible camp environment. Camp exists to remind each of us that even in the dark times, in spite of the challenges and difficulties these diagnoses bring upon our families, joy can still exist. Families enjoy all sorts of traditional camp activities, including horseback riding, fishing, archery, swimming, arts and crafts, and those less traditional like music therapy and the unique experience of “Messy Games”!
At a Glance
campers attended the 2019 quality of life family camp
medical professionals, volunteers, and family members also attended camp
■ medical professionals
We at SRNA care about the members of our community and work to ensure that they have access to the most up-to-date information, research, and resources. Our Medical Professional Network is a growing list of medical professionals who have experience in the rare neuroimmune disorders and can provide knowledgeable care to individuals diagnosed with ADEM, AFM, MOGAD, NMOSD, ON, and TM. Our Myelitis Helpline is a tool for our community to quickly get answers to their questions and to be directed to information resources. Our Resource Library contains a collection of over 400 resources including podcasts, videos from symposia, research article summaries, and more that help educate our community on rare neuroimmune diagnoses. In 2019, we held our biennial Rare Neuroimmune Disorders Symposium in Columbus, OH where over 200 people gathered to learn about the rare neuroimmune disorders from leading medical experts in this field. Finally, in 2019 we developed a comprehensive packet for new members to help them learn about our organization and to provide them with information on their diagnosis.
It can be difficult to find medical professionals who have experience treating individuals with rare neuroimmune disorders. Our Medical Professional Network makes it easier by providing a directory of healthcare providers who have experience with these disorders, which is searchable by location, name, and specialty. The directory is constantly updated as we work toward making connections with healthcare professionals and educating the medical community about these disorders.
Dr. Eoin P. Flanagan was added to our Medical Professional Network in 2019 and quickly served as a source of information for our community. He graciously volunteered his expertise as a guest on our Ask the Expert podcast episode, “Imaging Patterns in Myelopathies and Myelitis” which you can access via our Resource Library.
At a Glance
new medical professionals added
The need for guidance and quick answers to questions about a rare neuroimmune diagnosis led to the creation of the Myelitis Helpline, a free online resource that allows those who have recently been diagnosed, or anyone at any point after the onset of a rare neuroimmune disorder, to get answers and support about living with their disorder and to ask detailed questions.
At a Glance
individuals supported through the myelitis helpline
SRNA has an extensive collection of information on rare neuroimmune disorders available, which are housed in our Resource Library. Podcast recordings, videos of presentations from past symposia, research summaries, information sheets, and more are available at no cost to anyone with internet access. In 2019, we added 67 new resources to the library.
At a Glance
new resources added in 2019
‘ask the expert’ podcasts hosted
SRNA hosts an annual Rare Neuroimmune Disorders Symposium, where we bring together leading experts in the field of neuroimmunology and members of our community who are affected by a rare neuroimmune disorder for an educational event. Our 2019 Symposium was held from September 19-21 in Columbus, OH and featured 32 presentations on topics such as bladder and bowel dysfunction, pain and parasthesia, spasticity, obstetric issues, current research studies, and more. We also featured a panel of individuals diagnosed with a rare neuroimmune disorder to share their stories and connect with other attendees.
At a Glance
presentations were given at the 2019 RNDS
2019 RNDS video views
participants at the 2019 RNDS
In 2019, 888 new members joined the association, including individuals diagnosed with AFM, ADEM, MOGAD, NMOSD, ON, and TM, relatives, and caregivers of people diagnosed, healthcare professionals, and others who have an interest in this cause. We created a brand new Membership Packet designed to provide new members with all the information they need on their diagnosis, the programs and resources SRNA provides, and opportunities to get connected with others who are diagnosed with a rare neuroimmune disorder.
There is currently no cure for ADEM, AFM, MOGAD, NMOSD, ON, or TM. SRNA is dedicated to funding and conducting research to help better understand, treat, and ultimately cure these disorders. We fund research to increase the scientific literature on the rare neuroimmune disorders and share knowledge with a wider net of clinicians. We also conduct our own research, including the SRNA Registry and a Vaccination Study. We fund the fellowship training of clinician-scientists who are specializing in the rare neuroimmune disorders through the James T. Lubin Fellowship to help create more specialists and researchers who will study these disorders.
2019 was another exciting year for research on rare neuroimmune disorders. We know how important research is for improving the quality of life of our community and it remains a top commitment for us as an organization. We do this through The Pauline H. Siegel Eclipse Fund for research. This fund drives critical research priorities including improving diagnosis, understanding causation, investigating novel therapies, and restoring function. You can read all about the 2019 research advances in our research updates page.
At a Glance
funded research publications and presentations
To date, the SRNA Registry has had 208 participants complete the survey. Of the respondents, approximately 82% are diagnosed with transverse myelitis, 7% are diagnosed with neuromyelitis optica spectrum disorder, 5% are diagnosed with acute disseminated encephalomyelitis, 2% are diagnosed with acute flaccid myelitis, 1% are diagnosed with MOG antibody disease, and 7% are diagnosed with another disease or have yet to receive a diagnosis. Any individual diagnosed with a rare neuroimmune disorder, or the parent or caregiver of a child under 18-years-old who is diagnosed with one of these disorders, may participate.
At a Glance
people participated in the SRNA registry in 2019
We at SRNA launched a study about experiences with vaccinations after a rare neuroimmune disorder diagnosis in 2016 thanks to the generous support of Barbara Ellis, an active member of our community. The goal of the study was to understand and learn from our member community about their experiences with receiving vaccinations before and after a rare neuroimmune disorder diagnosis, with a focus on their experiences after diagnosis. We are currently analyzing the survey results from over 223 participants and look forward to sharing the findings with our community over the next few months.
What percentage of individuals with rare neuroimmune disorders have received vaccinations after their diagnosis?
What has been their physician’s advice regarding vaccinations?
Of those who received vaccinations, what vaccinations did they receive, and did they experience any complications, including a new inflammatory attack 30 days or less after a vaccination?
The James T. Lubin Clinician Scientist Fellowship Award was established in 2008 to grow the number of clinicians and researchers dedicated to the field of rare neuroimmune disorders. This program supports up to two years of clinical care and research training in an environment where clinicians learn to use the most current scientific tools to treat and advance knowledge about rare neuroimmune disorders. Fellows are required to conduct a research study on one of the rare neuroimmune disorders. In 2019, SRNA continued funding the fellowship training of three clinician-scientists within the United States: Dr. Kyle Blackburn, Dr. Jonathan Galli, and Dr. Olwen Murphy. Dr. Blackburn joined us at the 2019 RNDS and gave a talk about MOG Antibody Disease. Former fellows, Dr. Michael Sweeney and Dr. Cynthia Wang joined current fellows, Dr. Kyle Blackburn and Dr. Jonathan Galli, to answer questions from our community during the 2019 RNDS.
At a Glance
funded fellows to date
total fellowship grants awarded to date
I am finishing up my first year of fellowship, which was focused on training in the diagnosis and treatment of patients with rare autoimmune neurological diseases. Moving into this year, I will be starting my own clinic at the University of Utah with specialty focus in the care of patients with illnesses including transverse myelitis, neuromyelitis optica, encephalitis, and autoimmune epilepsy. I will also be working with our pediatric hospital in providing transition of care for our adolescent and young adult patients. My research project looking at NMO patients in the Department of Defense is nearly at the “halfway” point. We are almost finished gathering all the patient information from the records. Once this is done, we will be assessing blood samples on these patients to try and determine when the aquaporin-4 antibody appears in neuromyelitis optica (NMO). Our project will also report on age of NMO diagnosis, other associated autoimmune diseases, and outcomes from treatment. Before the end of my fellowship training, I hope to be submitting our data for publication. After completion of my fellowship, I plan on staying at the University of Utah with my clinical focus on patients with autoimmune neurological diseases. I will be working on several different projects within the first several years after my fellowship. One project looks to improve access for our patients in our clinic by improving the efficiency within the clinic. I also plan to work on improving the diagnosis and treatment of our patients when they are in the hospital.
It has been a privilege to serve as one of the Lubin Fellows with the SRNA. Since starting the fellowship, I have been working closely with Ben Greenberg and previous Lubin fellow Cynthia Wang at UT Southwestern. During this time, I have worked with adults, children, and families impact by rare neuroimmune disorders at all phases of care. As you know, this fall saw another increase in AFM cases across the US, and our team at UT Southwestern was very involved in coordinating the care and ensuring proper reporting to the Health Department and CDC. I have also been participating several research studies at UT Southwestern. In collaboration with the SRNA, we have recently launched the Comprehensive Outcomes Registry Exploring Transverse Myelitis (CORE TM) study. This study aims to collect medical records, imaging and survey information from 1000 persons living with TM, to compile the largest study of long-term outcomes for TM, and learn how different treatment may impact those outcomes.
Over the past two years at Johns Hopkins Myelitis and Myelopathy center I have learned a huge amount about caring for patients with spinal cord disorders. I have worked with patients with transverse myelitis, spinal cord strokes, other vascular myelopathies, acute flaccid myelitis, neuromyelitis optica, anti-MOG antibody disorders and other even rare causes of myelopathy. Through this work, I have learned about the diagnosis, management and rehabilitation of these disorders. My training has equipped me to move forward in establishing a career in this field. Along the way, meeting patients and their families with spinal cord problems has been a humbling and inspiring experience. Hearing how patients are making progress with rehabilitation and surmounting the challenges that spinal cord problems bring to their lives is always heartening, and acts as a reminder for why we should continually strive to improve care for this group. Involvement in SRNA has allowed me to meet many patients and families in a more fun and casual setting outside of the clinic, and this is something I have really valued. My research work has led down interesting paths and I have developed particular interest in how we can use modern MRI imaging to improved diagnosis and prediction of outcome in these disorders. I recently completed my two years as an SRNA fellow funded through the James T. Lubin fellowship, and I am fortunate enough to be continuing my clinical and research work at Johns Hopkins for now. I hope to continue working in this field for many years to come and I look forward to the challenges it will bring!
We believe that everyone has a role in improving the quality of life of people with rare neuroimmune disorders. Whether you support us with your time, expertise, or funding, you will be a key player in helping us end rare neuroimmune disorders for good. Join us. We can’t do it without you.
Use Your Voice
You are your own most powerful advocate. Your own voice is the most effective in relaying your story and it must be heard! Share your story with your friends, family, and local community. Be powerful and enact change – sign on to legislation or encourage and empower others through sharing your story on our blog or as a Hope Ambassador. Change begins when we speak up and make our voices heard!
Mobilize an Awareness Day
Begin locally. Start a Walk-Run-N-Roll in your community to raise awareness of these rare disorders. Join others in your community who share your experience to petition your local and state government to recognize the lives of those living with and caring for those with a rare neuroimmune diagnosis and the importance of awareness days and events.
Start a Support Group
Sharing our experiences and learning together with others who truly understand what it is to live with or care for another with a rare neuroimmune disorder can be life-changing. Start a Support Group in your area to connect with others. Our own voices are powerful but just imagine what can be done when we come together as one!
Looking for a way to get more involved in a cause you care about? Become a volunteer with the Siegel Rare Neuroimmune Association! We are excited for you to show your passion to connect, care, and accelerate research for a cure for rare neuroimmune disorders. Below you can find some examples of how you can volunteer for SRNA.
Your fundraising fuels the programs that are improving the quality of life of individuals with rare neuroimmune disorders. From bake sales to dinner, auctions, and birthday fundraisers, they’re creative and inventive! You can collectively raise thousands of dollars and be the one responsible for the expansion of our research and education programs. Join us!
Join the SRNA Registry
Share information about your diagnosis in a patient registry that has been designed to learn more about the natural history of rare neuroimmune disorders, treatments and outcomes using standardized tools. By sharing your information, you will help advance research about rare neuroimmune disorders.
We are here for you. If you have questions, need inspiration, or just want to chat about different ways to get involved, give us a call: at +1 (855) 380-3330 or send us an email at [email protected].
Our work is made possible through the generous support of our community. By choosing to donate to The Siegel Rare Neuroimmune Association, you are actively helping advance research, enhance clinical care, raise awareness and advocate for those with rare neuroimmune disorders. Donate today!
Our Board of Directors
Bruce L. Downey
Anjali Forber-Pratt, PhD
Benjamin M. Greenberg, MD, MHS
Lana Harder, PhD, ABPP
Peter C. Johnson, MD
Douglas A. Kerr, MD, PhD
Carlos A. Pardo-Villamizar, MD
Sanford J. Siegel, PhD
Dennis P. Wolf
Our Medical & Scientific Council
Audrey Ayres, RN, BSN, MSCN, CRND
Gregory N. Barnes, MD, PhD
Brenda L. Banwell, MD
Daniel Becker, MD
Julius Birnbaum, MD
James Bowen, MD
Janet M. Dean, MS, RN, CRRN, CRNP
Allen D. DeSena, MD, MPH
Jerome deSeze, PhD
Denise Fitzgerald, PhD
Donna Graves, MD
Benjamin M. Greenberg, MD, MHS
Lana Harder, PhD, ABPP
Anu Jacob, MBBS, MD, MRCP, DM
Adam I. Kaplin, MD, PhD
Douglas A. Kerr, MD, PhD
Charles E. Levy, MD
Michael Levy, MD, PhD
Joanne D. Lynn, MD
Maureen A. Mealy, RN, BSN, MSCN
Carlos A. Pardo-Villamizar, MD
Frank S. Pidcock, MD
Kathleen Zackowski, PhD, OTR
Barrow Neurological Institute
BJ’s Wholesale Club
Blue Dyer Distilling Company
CAI Builders, LLC
Chuck’s BBQ LLC
Cousin Jimmy and Uncle Jimmer
Factory Donuts Newtown
Firearms Training Incorporated
Fringe Hair Boutique
Gun Monkey’s Armory
Haldeman Lexus of Princeton
Hamilton Township Police SOA #66-A
High Stack Gordon Kirby Attorneys At Law
JDaniels Psychtherapy SVCS, Inc
Kennedy Krieger Institute
Leverege LLC 07/14
Mark Drugs Northshore, Inc.
Merle Norman Cosmetic Studio
Moco Founding Fathers
Novartis Pharmaceutical Corporation
Sabino Veterinary Care
Scotts Miracle-Gro Company
Skyview Satellite Networks, Inc.
Smokers Delight BBQ LLC
Summer Illusions Tanning Salon
Texas Ribs & BBQ
The Miracle Center of Faith Missionary Baptist Church
The MOG Project
Toyota of Melbourne
University Associates in Dentistry, Ltd
Villa Mannino Ristorante
Social Media at a glance
followers and subscribers
posts and videos shared
Allocated expenses at a glance
In 2019, SRNA expended a total of $992,000, of which $829,000 was spent on research, education, and support programs. We are truly grateful for the sacrifices made by our community and appreciate your generosity. We are mindful of every dollar spent and continue to utilize thousands of hours of volunteer time to manage the organization.
total number of donors
of SRNA members donated