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Dear Friends,

It is my pleasure to present you with our Annual Report for 2018. I am so proud of our accomplishments. You will read about our education and support programs, the research we endorse and conduct, our quality of life family camp, our Jim Lubin Fellowship, as well as all the other important efforts we carry out on a daily basis to better serve our community.

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from the President

When Pauline was diagnosed with transverse myelitis in 1994, the field of rare neuroimmunology was a wasteland. No education. No support. No specialists. No research. No nothing. We helped establish the organization to fill a deep and dark void. Pauline was a kindergarten teacher. I was a cultural anthropologist. Neither of us had any training or experience in medicine, public health or social work. We had no grand plan. All we knew from our most personal and challenging experiences was that the deep and dark void desperately needed to be filled.

A small group of dedicated volunteers including Jim Lubin, Debbie Capen, Paula Lazzeri, and Deanne and Dick Gilmur joined together to make a difference. That an all-volunteer not-for-profit was able to survive for 17 years was nothing short of miraculous.   

From our earliest days, it was apparent that the relationships formed within a rare disease group are profoundly intense. When people meet another person for the first time with their diagnosis, a bond is formed that will never be forgotten. For many people with transverse myelitis, their first meeting was with Pauline. I’ve watched these meetings become lifelong relationships. We witnessed these bonds formed at our first symposia, our first camps and through Jim’s transverse myelitis internet club.

We knew from the beginning that whatever else we needed in the way of research, information, and education, everyone diagnosed with a rare neuroimmune disorder needed a community. So, we created a community.

Everything we did and how we did it fostered community. We embraced new members. We offered endless hours of education and support. We welcomed new diagnoses into our rare disorder club. We encouraged physicians and researchers to join our group, not just by doing the research or caring for patients; we invited them to participate at our education programs and our camp. We wanted them to be a part of our lives in a meaningful way, outside of the clinic or laboratory. We developed great working relationships with many organizations because we are collaborative and not competitive.

And this brings us to 2018. A year where more than 13,300 individuals from over 111 countries are part of our global community. There are many ways to measure the achievements of an organization. I wouldn’t say that 2018 was a wonderful year. A wonderful year would be one where no child or adult was diagnosed with one of these horrible disorders. I would say we have had an impactful year. We have created meaningful relationships between people. Many of these bonds will become lifelong friendships. We have helped people become informed advocates for their medical care. We have helped people find a good physician and guided them toward appropriate acute treatments and rehabilitation. We have helped people deal with all their symptoms. We have helped people find rays of hope in their darkest moments. We have helped children meet other children who are just like themselves. This is the work our organization does every single day. It isn’t easy to convey this message in a graph or a table. It is the most important way for us to measure our accomplishments. We make a difference, a profound difference, in people’s lives.

We have created a community and a positive, supportive, inclusive, caring culture. The community we’ve established over these many years reflects our collective personal journeys. In recognizing 2019 as the 25th anniversary of our organization, I will be reflecting on the great difference Pauline made in this world, and the difference our organization has made in helping people live with the most challenging times in their lives. It is this culture and community of which Pauline and I are most proud.

Please take good care of yourselves and each other.

Sandy Siegel, PhD | President, SRNA

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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-Associated 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.

In 2018, our community came together to raise over $684,000 and helped us support more than 13,300 people around the world.

In 2018, SRNA expended a total of $710,000, of which $630,000 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.

Our community is made up of individuals with rare neuroimmune disorders, their family members and caregivers, and the medical professionals who treat individuals with these disorders. They are a community of heroes for a common cause – to advance diagnosis, treatment, research, and awareness of ADEM, AFM, NMOSD, MOGAD, ON, and TM, and share their stories with others.

End of Year Reflections

Advocacy is a joint effort. It requires a dedicated community of people that believe 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 34 Walk-Run-N-Rolls that have taken place since 2012. In 2018, our community leaders led Walk-Run-N-Roll events in five cities and raised over $71,000 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.

Last year, we expanded our awareness events to include an Author Night for the Pauline H. Siegel Eclipse Fund for Research and Candles for a Cause. The Author Night was organized by Pauline Siegel’s book club to honor her and celebrate her life and her legacy. In Pittsburgh, The Candle Lab donated a percentage of proceeds from the sales of their candles for one day. For many of those in attendance at The Author Night for the Eclipse Fund or who made a purchase at Candles for a Cause, it was the first time they had heard about SRNA. These events help increase the awareness of our organization and all the different rare neuroimmune disorders we advocate for. We are incredibly excited to see what other creative events our community members will come up with in 2019!

We partnered with other mission-aligned organizations to increase the visibility of our community. SRNA is a member of the National Organization for Rare Diseases (NORD). Each year, our community volunteers participate in NORD’s annual Rare Disease Day, which takes place on the last day of February each year. In 2018, we attended NORD’s Rare Disease Summit to raise awareness of rare neuroimmune disorders amongst the other rare disease populations, pharmaceutical companies and medical professionals. We also partnered with The Sumaira Foundation for NMO (TSF) and look forward to working together to raise awareness, increase knowledge, and advance research in rare neuroimmune disorders. TSF was founded in Massachusetts in 2014 by Sumaira Ahmed, two months after being diagnosed with sero-negative neuromyelitis optica.

Social media continues to allow us to advocate with accurate up-to-date knowledge, answer clinical and research questions, engage, share articles, photos and videos about those who inspire us with their perseverance. With over 10,000 followers and more than 50,000 engagements, our social media community shows the power of building a network to advocate and connect with each other. We can’t do this alone.

At a Glance

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There is strength in numbers

In October 2017, Gail Buch attended SRNA’s Rare Neuroimmune Disorders Symposium (RNDS) in Columbus, OH with her sister, Maureen Hallagan. Gail and Maureen are the first two people to be identified to have familial transverse myelitis. The two sisters were attending the RNDS to hear a presentation by Dr. Michael Levy, who was presenting results from the genetic research study they participated in. During the RNDS, Gail met three other women from Arizona. In conversations throughout the weekend, the group discussed how they could work together to raise awareness and funds for research.

“On the plane ride back to Arizona, fate happened to have us seated right next to each other, and the plan to have the Arizona Walk-Run-N-Roll was conceived.

Organizing a Walk-Run-N-Roll was extremely gratifying for me. Having been diagnosed with TM myself, being able to give back to SRNA was the best thing I could do. It was awesome meeting others in SRNA community, especially my new friends in Arizona.

And we are building momentum. When people that have been diagnosed with a rare neuroimmune disorder come to an event to meet others, often for the first time, we are reaching those in need. I’ve heard so many folks say, ‘I have never met anyone with transverse myelitis before!’.

The grassroots effort we’ve taken in Arizona to raise awareness and lend support to others is having an impact on multiple levels. Those in the local SRNA community now realize they are not alone…there are several people living right here in our town, city, and state; we are gaining the attention of a renowned neurological institute (Barrows); and, we are increasing the level of awareness to the general public.

We would have never been able to achieve the level of success we had if it had not been for the volunteers who helped us make it happen. There is definitely strength in numbers, but it all starts with one, and that one could be you!”

— Gail Buch, AZ Walk-Run-N-Roll Organizer

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Our support extends to not only those who are newly diagnosed  but also those who have been living with one of these disorders for many years. We offer support through timely and accurate treatment information, as well as research updates. No matter where one is on their journey with these disorders, we are here to provide our support. We understand the questions, the anxiety, the sense of fear and loneliness. We’re committed to showing our community that none of us are alone.

A mom, up most of the night with her inconsolable infant son, suddenly finds herself in the intensive care unit, now counting the breaths he takes over the ventilator. They are few and far between. The different physicians, questions, and testing in the last 48 hours are leaving her exhausted and empty. She wants to hold her baby, but she’s not able to yet. The diagnosis they’ve been given leaves very little room for hope and far more questions. What does this all mean? She’s never heard of such a thing as a rare neuroimmune disorder. The doctor has only seen this once before in his 20+ year career. Should he even be treating her son? What does her child’s, her family’s future hold?

Many families experiencing the shock and overwhelming emotions of a rare neuroimmune disorder take to the internet for answers. Many find us online and connect with us via our Myelitis Helpline or email. A personal phone call provides a caring voice to answer questions, direction to available resources and information about research being done on rare neuroimmune disorders. We also offer direction through our Medical Professional Network of 175 experts to connect families and individuals to not only show where the most experienced physicians are, but also provide connections between the experts in these disorders and clinicians around the world. A peer-to-peer connection to an expert can be invaluable for a family not able to travel and may help ensure a proper diagnosis, treatment options, and rehabilitation recommendations.

A husband watches as his wife works with a therapist. It has become a daily routine, hours of daily therapy, making certain she can adapt and get back to their home. They’re manipulating her wheelchair and placing her body just so, to best transfer her into a vehicle. He’s called in to slide her over and position her safely. She seems complacent, just going through the motions with minimal verbal communication. He knows she hates being so dependent upon him for such basic skills. Six months ago, she was running, hiking, biking – athletic and always on the go. His heart wrenches as he sees the despair in her eyes but doesn’t know what to say or do. They’re so close in proximity, yet the distance between them is gaping. Their community, family and friends were so helpful when they first learned of her diagnosis and they know they still care but it seems everyone has gone back to their “normal” except them. They both experience such a sense of loneliness. Is this their life from here on out?

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, to the family and loved ones feeling helpless and uncertain on how to connect with someone they love so much. It can be so isolating. And that’s where we step in: by providing meaningful connections between individuals diagnosed with the disorder, or caregivers and loved ones who understand the shock and overwhelming sense of loss. And connections in 2018 didn’t fall short. Through Smart Patients, our Online Community Platform, we welcomed 301 new members to the community for a total 1,427 members. Our Support Group Network has grown to 28 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.

An HR rep from the largest employer in a small town is stumped. A long-time employee, retiring next year and anxious and excited to pursue his dreams of traveling, was hospitalized after collapsing with excruciating pain. He was diagnosed years ago with a rare neuroimmune disorder and the years of pushing his body to its max and the overwhelming fatigue, has caught up with him. His family tells her he can no longer perform the job the same way he has for over 30 years, but they’re not ready to be without his income. This flare in his otherwise manageable symptoms wasn’t a part of the plan. She hears their fear and doesn’t know where to turn to begin to understand what this hardworking, dedicated man may be going through. Maybe they can make accommodations, but she needs a better understanding of his diagnosis and why this is impacting him again now, so many years later, so she knows where to begin and how she may be able to help.

A call to our toll-free number or an email to [email protected] connects every person or organization who reaches out to us with a staff member. Every call and email are answered personally and offer support and direction via our individual experiences and the resources available on our website and Resource Library. We have provided support to over 2,132 individuals, parents, spouses, friends, co-workers, employers, and treating physicians and clinicians in 2018, as they seek information about treatments, outcomes, research, support and connections with others about the rare neuroimmune disorders.

A rare neuroimmune disorder can happen to anyone of any age, race, gender, or lifestyle. It usually comes out of nowhere, sending an individual and their loved ones into a tailspin. So many have never heard of these disorders, let alone know what they mean. An overwhelming sense of anxiety can often accompany these diagnoses, barraging an individual, a parent, a spouse, friend, or co-worker with so many questions. If not immediate, as time moves on and the realization of the disorder and it’s possible or continued impacts, a sense of loneliness and isolation may set in. These disorders are so rare, almost unheard of, where can one turn to find answers, to ask questions they may not have even formulated yet, haven’t dared to ask over the years, or find someone else who truly knows the indescribable pain one may be in – physically or emotionally? 

SRNA is where they turn. Whether they find us via a sleepless night’s Google search, as a referral from a clinic or physician, a local support group, or a friend of a friend who has heard of SRNA, we receive the inquiries, and we are here, ready to support this community. Our community.

At a Glance

“After being briefly misdiagnosed with multiple sclerosis (MS), I got a diagnosis of neuromyelitis optica spectrum disorder (NMOSD) in November 2013. Not knowing what that was, I began tiresome and misleading Google searches. During that time, I happened to stumble across the Transverse Myelitis Association’s (SRNA) website and began to soak in whatever information I could to better equip myself with this new diagnosis. I also got involved in any and all online communities. I was not going to let this diagnosis define who I was.

Meanwhile, a fellow community member was beginning to put together the Central Texas SRNA Support Group. Interested in what it was about, I was one of the first members to attend. Shortly after the support group was created and beginning to take off, the previous leader had a change in jobs that took her out of state. She approached me, asking if I would like to take over. Very unsure of what that meant at the time, something inside of me said to do it, so I did!

Fast forward to today and I have been the Central Texas SRNA Support Group Leader for four years. I couldn’t imagine it any other way! When I was first approached with this opportunity, I had no idea the amazing people I would meet along the way. SRNA has proven to be a wonderful support system for our community and has provided a vast amount of advocacy and education, not only for those with NMOSD, but a variety of rare neuroimmune disorders. The community of local support groups has grown, and we have all made new friendships, thanks to SRNA and the heavy role they play getting us set up for success.

I was not left with devastating damage from my attack, which is what gave me the strength to take on this role. Living with NMOSD, transverse myelitis, or any other rare neuroimmune disorder is never something easy to do by yourself. My goal is to reach out to patients, families, and caregivers that are all going through the same thing and provide helpful and useful information, knowledgeable speakers, and an overall support system for everyone involved.”

— Heather Reynolds, Central Texas Support Group Leader

Education has been the cornerstone of our organization since we were founded in 1994. We know how important it is to empower our community members to become better self-advocates. In 2018, we continued to build on our understanding and knowledge of what it means to live with a rare neuroimmune disorder by sharing experiences from our community members and clinical and scientific experts.

The field of rare neuroimmunology continues to grow with increased clinical experience and understanding of the disease processes. Recently, an antibody to Myelin Oligodendrocyte Glycoprotein (MOG) was identified and its clinical significance explored in more detail. MOG antibodies have been found in individuals diagnosed with NMOSD who do not have antibodies to AQP4, in acute disseminated encephalomyelitis, transverse myelitis, and optic neuritis. MOGAD was added under the umbrella of SRNA last year. Through the leadership of community members, the MOG Project was founded to raise awareness, educate, and expand research specific to this disorder. 

Since 2014, cases of Acute Flaccid Myelitis (AFM) have continued to increase. Our clinician experts have taken on the challenge of better diagnosis, treatment and management in partnership with us and families of those diagnosed with AFM by establishing the AFM Working Group, led by Dr. Carlos Pardo from the Johns Hopkins Transverse Myelitis Center. The Group consists of dedicated medical professionals and researchers from approximately 25 institutions and SRNA who have come together to confront the outbreak of AFM with a collaborative and comprehensive strategy. As part of our commitment, SRNA formed a parents’ group to identify gaps in knowledge, raise awareness and share accurate knowledge with the community through educational materials, social media, meetings, support groups, and conferences.

Twenty-two experts joined our Ask the Expert Podcast series in 2018 to share their knowledge and experience on a broad range of topics from Stem Cells as Treatment for Rare Neuroimmune Disorders to Air Travel with a Disability. Over 4,000 listeners joined these live podcasts that were moderated by members of SRNA staff and community to ask questions, share their experience and learn from the experts. The recordings in our resource library have been accessed more than 5,600 times.

The 2018 Annual SRNA Quality of Life Family Camp was held at The Center for Courageous Kids in Scottsville, KY from July 22-26, 2018. Families from across the country gathered for five perfect days of carefree enjoyment at an accessible camp. Medical professional volunteers joined us to lead educational sessions for the parents, so that they could learn from experts in the rare neuroimmune disorders how to get the best medical care for their children.

In October, we partnered with Boston Children’s Hospital Center for Pain and The Brain and under Dr. Nadia Barakat’s leadership, hosted a Regional Rare Neuroimmune Disorders Symposium (RNDS) in Boston. Over 100 attendees gathered to learn from medical experts in the field of neuroimmunology, ask questions to which they could not otherwise get answers, and connect, share and learn from each other. Videos of the presentations are available in the Resource Library on SRNA’s website.

At a Glance

The annual SRNA Quality of Life Family Camp is a special experience that allows children with rare neuroimmune disorders and their families to enjoy the activities of a typical summer camp without limitation. Austin, who was diagnosed with AFM at age 6, attended camp in 2018 along with his parents and sibling.

“This was our family’s second year to attend camp at CCK. It was just as exciting as our first year. Our son Austin has Acute Flaccid Myelitis. He has dealt with a lot of trauma over the past two years since being diagnosed. From being in a hospital for 6 months, numerous surgeries, never-ending therapy and appointments. He has overcome a lot and it was great to see him have so much fun with the counselors and friends he made. His little brother was right in the middle of all the fun! My husband and I were able to visit with other families who have been going through the same struggle our family has endured. We gained knowledge and insight from the physicians and staff who were there to answer questions and guide us in the right direction for Austin’s needs. The whole experience while being at camp was amazing and we appreciate everyone who made it possible!”

— Michelle Daniels, mother of Austin, 9

Today, we know more than we did 25 years ago about rare neuroimmune disorders, though many questions still remain unanswered. Research and discovery offer us hope. At SRNA, we are steadfast in our commitment to invest and accelerate research to shape a better future.

A central tenet of SRNA’s mission is to advance the scientific understanding of the causes of these disorders and develop new acute and restorative therapies. In 2018, we supported clinical research that was presented at the 70th American Academy of Neurology Annual Meeting in Los Angeles in April 2018. Eight posters and presentations were included in this meeting of international neurologists that were supported by SRNA.

Our 2018 research initiatives focused on recent exciting developments involving restoring function and identifying a genetic marker for TM. We continued our work, in collaboration with Q Therapeutics and the University of Texas Southwestern, to start the first FDA sanctioned cell therapy to promote repair through myelin regeneration in transverse myelitis. Preparation has been completed for the study and enrollment will begin in 2019. Dr. Michael Levy at The Johns Hopkins School of Medicine, expanded his SRNA supported work on his discovery of a gene mutation (VPS37A) currently known to be present only in individuals with transverse myelitis. His team screened an additional 60 individuals and found 5 more with a VPS37A mutation.

In the Fall of 2018, during the AFM outbreak, clinicians, health care providers and SRNA proactively established the AFM Working Group, led by Dr. Carlos Pardo from the Johns Hopkins TM Center. The Group consists of dedicated medical professionals and researchers from approximately 25 institutions and SRNA who have come together to confront the outbreak of AFM with a collaborative and comprehensive strategy. The Working Group is pursuing research that spans diagnosis, treatment and rehabilitation of those with AFM.

SRNA also began a study looking at our community’s experiences with vaccinations thanks to the generous support of Barbara Ellis, an active member of our community. The goal of the study is to understand and learn from SRNA members about their experiences with vaccinations before and after a rare neuroimmune disorder diagnosis. We randomly selected 600 members of SRNA to receive the survey and are continuing the follow-up with these individuals.

The SRNA Registry, a SRNA-led study conceived in 2017 that aims at understanding the natural history of rare neuroimmune disorders, welcomed almost 100 participants in 2018, and more members of our community are joining in every week.

Our investment in all of these studies and developments wouldn’t be possible without the support of our community through the Pauline H. Siegel Eclipse Fund for Research. In 2018, $245,172 was raised in a joint effort to continue to drive research forward. We hope that in 2019, through your generous support, we will be able to accelerate our research portfolio to fund discoveries that will impact the quality of life for the members of our community.

At a Glance

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Dr. Olwen Murphy’s experience with AFM

In the Fall of 2018, during the AFM outbreak, clinicians, health care providers and SRNA proactively established the AFM Working Group, led by Dr. Carlos Pardo from the Johns Hopkins Transverse Myelitis Center. The Group consists of dedicated medical professionals and researchers from approximately 25 institutions and SRNA who have come together to confront the outbreak of AFM with a collaborative and comprehensive strategy. Dr. Olwen Murphy has been a part of the Group since the beginning as part of her Fellowship training.

“2018 brought a peak in cases of Acute Flaccid Myelitis (AFM) in the United States. As a fellow in the Transverse Myelitis Center in Johns Hopkins, I have had the privilege of working with many children with AFM and their families over the past 9 months. This has been a truly unique experience. AFM is a rare disease predominantly affecting children, and often with disabling consequences. As a physician I have learned a huge amount regarding the diagnosis and management of AFM. It has been difficult to see some severely affected children in the midst of the acute stages of AFM, and in the Fall of 2018, there seemed to be no let-up in the number of critically unwell children transferred to our institution for care. However, the subsequent months were incredibly rewarding as I saw children make huge progress during rehabilitation in inpatient and outpatient programs provided by our colleagues in the Kennedy Krieger Institute in Baltimore. Bright moments included seeing children progress from using a wheelchair to walking independently, or a child sitting up and feeding themselves after weeks of tube feeding. That being said, many of the children I have seen with AFM face considerable ongoing challenges. Parents and families have demonstrated their strength as carers and power as advocates for their children living with the effects of AFM, and this has been inspiring for me to witness. As a researcher I am involved with the AFM working group, a network of healthcare providers around the United States interested in the care of patients with AFM. Collaboration across locations and specialties will help in improving the clinical care of patients with AFM and the development of research studies which will hopefully provide further understanding regarding the diagnosis, management and potentially prevention of this rare disease. Future years are likely to bring more cases of AFM and more challenges, but I believe that the community of physicians and scientists can work alongside patients and their families to tackle AFM as effectively as possible.”

— Dr. Olwen Murphy, James T. Lubin Fellow at Johns Hopkins, worked with SRNA and the AFM Working Group, led by her mentor, Dr. Pardo

Dr. Murphy received her medical degree from University College Dublin in Dublin, Ireland and completed a neurology residency at The Royal College of Physicians in Ireland. She is a James T. Lubin Fellow at The Johns Hopkins Transverse Myelitis Center (JHTMC) in Baltimore, MD, under the mentorship of Dr. Carlos Pardo-Villamizar. Dr. Murphy’s research is on predicting outcomes after a diagnosis of transverse myelitis using current imaging techniques and spinal fluid analysis. The goal of the research project is to identify patterns or biomarkers that can be used in day-to-day clinical practice to identify benefits from therapies and help make better decisions about care.

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Our James T. Lubin Fellowship is a constant reminder of our commitment to invest in specialized clinician-scientist training. Investing in a combined clinical and research career in academic medicine and robust research programs is the cornerstone of our work and will help us shape the future of the rare neuroimmunology discipline. 

We invest in training the best physicians caring for the people in our community. We invest to support existing Centers of Excellence in rare neuroimmune disorders and expand the number of these centers so that more of our community can receive knowledgeable and compassionate care. There is so much research that needs to be done. Enabling post-residency training of researchers on these disorders is a fundamental part of driving it forward.

We had a record number of Fellows in 2018, with four clinician-scientists in training at SRNA’s Centers of Excellence at UT Southwestern, Johns Hopkins University, and the University of Utah. In addition to clinical and research work at the institutions, all Fellows interact with SRNA community at SRNA Family of Life Camp, Rare Neuroimmune Disorders Symposiums, podcasts, and support groups during their Fellowship. 

Dr. Cynthia Wang completed her second and final year of her Fellowship at UT Southwestern Medical Center (UTSW). During her training she gained a greater understanding and appreciation of the nuances and diversity of rare neuroimmune disorders from her mentor, Dr. Benjamin Greenberg. Dr. Wang’s research interests at UTSW include ADEM and MOGAD, generating findings which have been shared at national meetings and through scientific publications. Dr. Olwen Murphy’s research at Johns Hopkins University is focused on looking at clinical and imaging biomarkers that may help predict diagnosis, response to treatment, and outcome in individuals with spinal cord disorders. Providing evidence-based recommendations to neurologists on these disorders helps ensure that those affected are diagnosed correctly and therefore treated appropriately.

2018 was the start of Fellowship training for two new Fellows, Dr. Kyle Blackburn at UT Southwestern Medical Center and Dr. Jonathan Galli at the University of Utah, who have cared for adults and children diagnosed with rare neuroimmune disorders. Drs. Blackburn and Galli joined us at SRNA Quality of Life Family Camp, where they met over 30 families impacted by rare neuroimmune disorders. Dr. Galli is working to establish an autoimmune neurology clinic within their pediatric hospital in Utah that will help facilitate transitions for pediatric patients to the adult clinics.

At a Glance

I have just finished my first year of fellowship at Johns Hopkins supported by SRNA through the James T. Lubin Fellowship. I have gained a huge amount of clinical experience. It has been really rewarding and interesting to follow patients on their journey from experiencing one of these rare disorders throughout the process of diagnosis, treatment and rehabilitation. For example, seeing some patients with spinal cord disorders progress from using a wheelchair to walking over a period of a few months has been fantastic. On the other hand, there have also been challenging cases which have shown me the challenges in dealing with neuroimmune disorders both from the doctor’s and patient’s perspectives. I look forward to building on this clinical experience in my second year of fellowship and working with patients with rare neuroimmune disorders throughout my future career.

Dr. Olwen Murphy
2017 Fellowship Recipient

Some of the most rewarding experiences during my fellowship have involved meeting members of SRNA community through support groups, conferences, and Quality of Life Family Camps. These individuals and their families have taught me so much through their medical experiences and inspired me through their courage and determination. I am so grateful to SRNA for allowing me to complete this training. I am committed to continue providing excellent care, engaging in research, and contributing knowledge to SRNA community in the next phase of my career as an Assistant Professor at UT Southwestern with appointments in the Department of Pediatrics and Neurology and Neurotherapeutics.

Dr. Cynthia Wang
2016 Fellowship Recipient

We have started our project on studying patients within the Department of Defense who have NMOSD. Up to this point, we are collecting information on age of diagnosis, specific details on where their condition is affecting them, as well as treatment outcome. Once we have finalized this data, we will begin to look at blood samples from these patients to determine when specific antibodies appear. We also will look for other inflammatory markers that may also be present.

Dr. Jonathan Galli
2018 Fellowship Recipient

I am starting to see children and adults that were newly diagnosed in the hospital returning to clinic having made significant gains, and that has been the most rewarding part of the experience. On the research side, we are putting the finishing touches on the Comprehensive Outcomes Registry Exploring Transverse Myelitis (CORE TM), which we hope will give us further understanding into the long-term impact of transverse myelitis so we can better address the needs of the community.

Dr. Kyle Blackburn
2018 Fellowship Recipient

As we approach our 25th Anniversary, we can’t help but ask ourselves: who cares about rare neuroimmune disorders? They are rare for a reason, right? After so many years we have learned so much, but there is still so much to discover.

At the end of 2018 we launched the #whocares campaign in light of our 25th Anniversary. Thanks to the extraordinary generosity of The Madison Charitable Foundation, all donations supporting our year-end #whocares campaign were matched, dollar-for-dollar up to $250,000, raising a total of $500,000. None of this could have been possible without the support of our community — thank you from the bottom of our hearts.

In addition, we launched #caresocks, an initiative to spread awareness about rare neuroimmune disorders. Anyone who makes a donation of $25 or more through our caresocks website, will receive a pair of the warmest, coolest, and most caring socks in town. Our goal is that 16,000 people will wear these amazing socks to make these disorders visible and make a difference in the lives of those who live with them every day.

2019 is all about research. We know how important it is to raise money to bring hope and help to more people diagnosed with ADEM, AFM, MOGAD, NMOSD, ON, and TM. As you might have gathered from our research updates, today, we are closer than ever in the search for a cure. And our team is more committed than ever to raise funds to make this a reality.

Projects include a cell-based remyelination study that will hopefully restore function, studies aimed at improving diagnosis, understanding disease genetics, and the development of scientific models for testing existing and new drugs and therapies that will directly impact the quality of life for our community.

The reality is that you need money to find a cure. You need people who care and are willing to make a difference. What happens next could be much, much bigger. And we can’t do it without you.

Tomorrow needs you.

2019 needs you.

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. 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 neuro-­immune 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 neuro-­immune 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!

Volunteer

Fundraise

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 SRNA Registry

Share information about your diagnosis in a new 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.

Want Support?

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].

Donate

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

Deborah Capen
Bruce L. Downey
Dave Evans
Anjali Forber-Pratt, PhD
Benjamin M. Greenberg, MD, MHS
Lana Harder, PhD, ABPP
Peter C. Johnson, MD
Douglas A. Kerr, MD, PhD
James Lubin
Linda Malecky
Carlos A. Pardo-Villamizar, MD
Jason Robbins
Barbara Sattler
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

Our Sponsors

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Danvers Community Access Television (DCAT)
Donna Anne Poulack Foundation
DuPage Accupuncture Clinic
Foxwoods Resort and Casino
Freckle Face Painting
Garner, Clay (Beat TM Foundation)
Genuine Concept Wear
Hallagan Furniture
Hangar Clinic
Holy Trinity Greek Orthodox Church – Koraes Ladies Society
Honda North
Kennedy Krieger Institute
Lady Gnar Shredders
Leland Grove Law
Mancan
Monkee Paint
Novaritis Pharmaceutical Corporation
Pepsico
Pittsburgh Winery
Powers, Kathleen
Sheridan Road Charitable Foundation
St. Haralambos Sunday School
Surv-Kap
Synergy Adaptive Athletics
Team Rehabilitation Physical Therapy
Texas Roadhouse
The Drunken Chicken
The More You Grow
The Sumaira Foundation
Viela Bio
Vistage
Wall’s Ford
Wiener Take All

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