The 2021 North Carolina Walk-Run-N-Roll

On October 11, 2006, Sarah Pritzker woke up and couldn’t feel her arms, legs, or anything from the chest down. This event was followed by a diagnosis of transverse myelitis and a two-month stay at an inpatient rehab hospital. Fifteen years later, Sarah volunteered with SRNA to hold the first North Carolina Walk-Run-N-Roll this October.

Friends and family of the SRNA community from all over North Carolina and beyond gathered at the Sandra & Leon Levine Jewish Community Center on October 17th. After enjoying some breakfast bites generously donated by Poppy’s Bagels, participants congregated in their bright orange event t-shirts to hear from speakers. Sarah gave everyone a warm welcome, outlined the events of the day, and thanked event sponsors for their support.

Sarah then shared her experience with transverse myelitis, followed by her mother Carole Pritzker. Carole described her experience as both a doctor and a parent of a person with a rare neuroimmune disorder. The final speaker was Carley Spisak, who shared her experience as someone with MOG antibody disease.

Then, it was time to walk in the sunshine! Adults and children took several laps around the track, some pushing strollers and others on scooters. After the walk, everyone had time to connect while decorating pumpkins donated by Harris Teeter.

We are so grateful for each person who came out or supported us from afar! Together, we raised nearly $5,000 to fund SRNA’s research, education, and support for those with rare neuroimmune diseases. Event sponsors included Alexion – AstraZeneca Rare Disease, Genentech, Horizon Therapeutics, and Brownlee Jewelers.

Gathering safely together was more special than ever after the past few years. Finding connection together is one of the things that makes the SRNA community unique. We are so grateful to Sarah and the other volunteers who worked tirelessly to make this first North Carolina Walk-Run-N-Roll a success, and we cannot wait to do it again next year!

If you would like to host a Walk-Run-N-Roll in your community, contact us at [email protected].

A Successful 2021 Rare Neuroimmune Disorders Symposium (RNDS)!

This past weekend, we held our biennial Rare Neuroimmune Disorders Symposium (RNDS)! The 2021 RNDS was hosted by SRNA , Massachusetts General Hospital, UT Southwestern Medical Center, Johns Hopkins Medicine, Harvard Medical School, Children’s Health Dallas, Johns Hopkins Myelitis and Myelopathy Center, MGH NMO Clinic and Research Laboratory, and the CONQUER Program. This year, the event was hosted virtually to ensure the safety of all participants. Forty-two speakers, eleven staff members, and 178 attendees gathered to discuss various topics regarding rare neuroimmune disorders.

Day 1 of the RNDS began with an introduction from SRNA President, Sandy Siegel. In his talk, Sandy stressed the importance of education and the evolving nature of research on these disorders. The day then divided into three different tracks. Track 1 was for those who were newly diagnosed with a rare neuroimmune disorders, Track 2 was for those who were diagnosed over two years ago, and Track 3 was for parents and caregivers of children with one of these disorders. Dr. Blackburn gave an overview of the diagnostic tests given to get to a diagnosis of ADEM, AFM, MOGAD, NMOSD, ON, and TM. Dr. Michael Levy discussed the long-term considerations of rare neuroimmune disorders. He answered questions about the possibility of relapses, long-term care, treatment options, and ongoing research. Dr. Sarah Hopkins gave an overview of several neuroimmune disorders in children, including descriptions of condition presentation, prognosis, and treatment options.

Next, disorder-specific talks were given for ADEM, AFM, MOGAD, NMOSD, and TM. Each of the speakers discussed the presentation, diagnosis, and acute treatments for each disorder. This was followed by talks on “Acute treatments at onset and relapse” and “Identifying relapses vs. temporary worsening of symptoms”, and a presentation by Cara Amos of Alexion, AstraZeneca Rare Disease, sharing an overview of Soliris, an FDA-approved treatment for the management of NMOSD. She discussed clinical trial results, eligibility criteria, patient support programs, and more.

Participants in Track 1 heard talks on “Transitioning from hospital to home”, “Early rehabilitation strategies”, and “Meet an occupational therapist and physical therapist: A conversation”. Track 2 contained talks on “Understanding MOG and AQP-4 antibody testing”, Ongoing rehabilitation strategies”, and “Disability benefits and vocational rehabilitation”. Participants in Track 3 attended talks on “Learning to understand your child’s symptoms”, “Pediatric rehabilitation strategies and surgical interventions”, and “Transitioning from pediatric to adult care: a conversation.” The day concluded with all attendees coming together for presentations on “Adaptations: Mobility devices, driving, and home modifications” and “Building your health care team”.

The second day of the RNDS began with a talk entitled, “What is neuropathic pain, numbness, and tingling?” from Dr. Ram Narayan. Dr. Narayan discussed the multiple mechanisms that can cause neuropathic pain, clinical features, and how a diagnosis is made by learning more from one’s history and a clinical exam. He talked about multiple methods of managing this very distressing symptom that causes a significant change in a person’s quality of life, including medicine, cannabinoids, devices, scrambler therapy, and the role of cognitive behavioral therapy in management of pain. Next, Dr. Lana Harder gave a talk on “The CNS connection and psychosocial aspects of being diagnosed with ADEM, AFM, MOGAD, NMOSD, ON, or TM”, in which she shared several research studies that looked at cognitive function in MS and TM, and compared fatigue and symptoms of depression as well.

We next hosted a panel of our non-profit partners, including representatives from SRNA, The Sumaira Foundation for NMO, The Guthy-Jackson Charitable Foundation, The MOG Project, The Cody Unser First Step Foundation, the Acute Flaccid Myelitis Association, and the Connor B. Judge Foundation. We then had talks on symptom management, including “UTIs, catheters, and incontinence”, “Identifying and managing fatigue”, “Solutions to managing spasticity in kids and adults”, and “How to manage constipation and prevent accidents: Bowel management strategies”. Dr. Tanuja Chitnis then gave a talk on “Pregnancy and a rare neuroimmune diagnosis”, in which she discussed how pregnancy affects someone with a rare neuroimmune disorder, how a rare neuroimmune disorder can affect pregnancy, safety surrounding delivery and breastfeeding, and treatment considerations during pregnancy.

Following these talks, we heard from Dr. John Chen for a presentation on “Management of vision after optic neuritis”. The marketing director at Genentech, Jason Kohari, then helped us learn about ENSPRYNG, an FDA-approved treatment of NMOSD in adults with a particular antibody – patients who are anti-aquaporin-4 or AQP4 antibody-positive. He shared how it works, their patient support program, and safety information. We ended Day 2 with talks on “Aging with a rare neuroimmune disorder” and a panel discussion on “Vaccinations after a diagnosis of a rare neuroimmune disorder.”

The last day of the RNDS focused on research. We began the day with a CDC AFM Biorepository and Moderated Roundtable on AFM Research, with a question and answer session. Dr. Carlos Pardo was joined by Drs. Nischay Mishra, Amy Rosenfeld, Eileen Yee, and Janell Routh to discuss research currently being conducted in AFM and what we have learned about AFM so far. The speakers stressed the importance of participating in research to provide better outcomes for future cases and answered questions from the community. Next, Dr. Benjamin Greenberg gave a presentation on “Research 101 – learn about the process of basic science and clinical research”. We then had talks on “Anti-MOG Associated Disorder: Insights Into Neuroplasticity and Opportunities for Repair”, “Assessing the impact of social disparities of health on disability and access to care in NMOSD patients”, and “Nutrition, Genetics, and stem cells in rare neuroimmune disorders”. GG deFiebre, SRNA’s Director of Research and Programs, gave a presentation on research conducted by SRNA, including an overview of the SRNA Registry, a study on vaccination behavior after a rare neuroimmune disorder diagnosis, and a study on the COVID-19 pandemic’s impact on our community.

We heard talks on “Research on rare neuroimmune disorders and rheumatologic diseases”, “CIRCLES and SPHERES NMOSD Studies”, and “APERTURE: What have we learned about ADEM?” Dr. Kyle Blackburn, a former James T. Lubin Fellow, then gave a presentation on “CORE TM and AFM”, which contained an overview of the CORE TM study, including the goal of the study and how someone can participate. The day ended with a panel discussion on “COVID-19 and rare neuroimmune disorders”. Drs. Michael Levy, Carlos Pardo, and Benjamin Greenberg discussed what is currently known about COVID-19 and rare neuroimmune disorders, including risk factors for people with a rare neuroimmune disorder, whether COVID-19 infection can cause a relapse or new inflammatory event, and data on long-haul symptoms following COVID-19 infection. The experts also talked about the COVID-19 vaccines and considerations for people with rare neuroimmune disorders who are making decisions about their care.

Throughout the event, attendees were also given opportunities to connect with one another through the “Networking” feature. Participants were matched with another guest and given a few minutes to chat and exchange contact info if desired, before being matched with another participant. We received positive feedback from those who networked, and many connections were made.

We are so thankful for all who joined us for the 2021 RNDS! We are incredibly grateful to all of our community members who attended, our speakers for their time and expertise, our wonderful non-profit partners, and our generous sponsors. We enjoyed learning from our amazing speakers and from the community members who shared their stories. We hope all who attended learned more about these disorders, connected with others who share similar experiences, and left the RNDS feeling empowered.

All presentations from the 2021 RNDS were recorded and are now available on our YouTube page. You can view talks from Day 1 here, Day 2 here, and Day 3 here.  We are working on getting the closed captioning and transcriptions prepared, and we will add them to the videos once they are ready. We will also add the videos to the Resource Library on our website in the coming days.

Until next year!

2021RNDS was supported in part through education grants by

* The Executive Committee of SRNA with the medical and scientific council determines the content and topics of the event. Supporters are not able to influence the education program.

Join us for the 2021 RNDS on October 8-10!

We invite you to register for our 2021 Virtual Rare Neuroimmune Disorders Symposium! This three-day conference will take place October 8-10, 2021.

While we would love to see you in person, we have made the decision to meet virtually until it is completely safe to meet in person again. We are excited to still be able to offer this experience, as it is one of our most important and long-standing programs.

The RNDS is an educational conference dedicated to the exchange of information regarding diagnosis, research, and treatment strategies. It is also an opportunity to bring together the community of individuals diagnosed with rare neuroimmune disorders, families, caregivers, and the medical professionals who specialize in these disorders.

We may be in different time zones across the world, which makes it inevitable for some sessions to not always take place at convenient times for everyone. Recordings will be available directly within the platform following each presentation.

We are grateful for feedback from our members from past symposia. We listened! The first day of the RNDS will be offered as three concurrent tracks: one for those who have been recently diagnosed, one for those who were diagnosed more than two years ago, and one focused on pediatric care.

The conference will include speakers on a variety of topics, including presentations on each of the rare neuroimmune disorders, talks on symptom management, updates from recent research studies, two Q&A panels with our experts, several breakout sessions, and more.

Some of the talks this year include:

  • “Transitioning from pediatric to adult care: a conversation” with Cristina Sadowsky, MD of Kennedy Krieger Institute and Cody Unser, MPH of Cody Unser First Step Foundation (October 8)
  • “Disability benefits and vocational rehabilitation” with Janelle Hewelt, MEd, CRC, who is also a support group leader at SRNA (October 8)
  • “Adaptations: Mobility devices, driving, and home modifications” with Sandy Hanebrink, OTR/L, CLP, FAOTA of Touch the Future (October 8)
  • “Aging with a rare neuroimmune disorder” with Dan Becker, MD of Johns Hopkins Medicine (October 9)
  • “Vaccinations after a diagnosis of a rare neuroimmune disorder” with Carlos Pardo-Villamizar, MD of Johns Hopkins Medicine, Michael Levy, MD, PhD of Massachusetts General Hospital and Harvard Medical School, and Benjamin Greenberg, MD, MHS of UT Southwestern Medical Center (October 9)
  • “SRNA research updates: Registry, vaccination study, and COVID-19 study” with GG deFiebre, MPH (October 10)

You can find all the necessary information about the online conference and how to register on our 2021RNDS page.

We are utilizing the platform Hopin to conduct this virtual event, which provides an accessible experience for our participants. This platform also has a tool for individuals to connect both privately and through a public chat function, which will allow for active feedback and discussion throughout the conference.

We are very excited to bring our community together for this educational experience, and we hope you will join us for this event!

Questions? Please feel free to contact us at [email protected].

We look forward to seeing you online and connecting with you next week!

2021RNDS is hosted by

and supported in part through education grants by

Join us for the 2021 RNDS this October

We at SRNA are excited to invite you to our 2021RNDS! The three-day conference will take place October 8-10, 2021.

While we would love to see you in person, we have made the decision to meet virtually until it is completely safe to meet in person again. By providing the RNDS virtually, we hope that more of our community will be able to join us. We will all be in the comfort of our homes, we will not pay to travel, and we will not have to pay for hotels. However, we will all be in different time zones across the world, which makes it inevitable for some sessions to not always be at good times for everyone. We will make the recordings of the presentations available directly within the platform a few hours after they are given.

Based on feedback from our community members, the first day of the RNDS will be offered as three concurrent tracks: one for those who have been recently diagnosed, one for those who were diagnosed more than two years ago, and one focused on pediatric care.

You can find all the necessary information about the online conference and how to register on our 2021RNDS page.

We look forward to seeing you online and connecting with you in October!

2021RNDS is hosted by

and supported in part through education grants by

AFM Awareness Month

During the month of July, SRNA will share information, resources, and stories in support of Acute Flaccid Myelitis (AFM) Awareness Month. AFM is a rare neurological condition, mostly affecting children, that causes limb weakness and can lead to paralysis. AFM abnormalities noted on MRI are predominantly found in the gray matter (lower motor neuron) of the spinal cord. It is important for everyone to #KnowTheSigns of AFM:

  • Sudden arm or leg weakness
  • Sudden loss of muscle strength
  • Sudden loss of reflexes

Other possible signs and symptoms include:

  • Difficulty moving the eyes or drooping eyelids
  • Facial droop or weakness
  • Difficulty with swallowing or slurred speech
  • Pain in the arms, legs, neck or back

Severe symptoms involve respiratory failure. It’s also possible to experience life-threatening body temperature changes and blood pressure instability.

AFM is a medical emergency, so it is critical that parents, pediatricians, and emergency care physicians know the signs. If you know a child who has any of the signs or symptoms listed above, seek medical care as soon as possible.

This month, as we continue to spread awareness of AFM, please follow along on our social media and share with friends and family. Follow us on Facebook, Instagram, and Twitter.

#KnowTheFacts About Transverse Myelitis

This Transverse Myelitis Awareness Month, we want you to #KnowTheFacts about transverse myelitis.

Fact #1: Transverse myelitis is a disorder with approximately 1,4oo new cases diagnosed in the United States each year, but it is not widely recognized by the general public as being a significant, serious spinal cord disease.

Fact #2: Transverse myelitis affects approximately 1-4 people out of every 1 million and is therefore considered a rare condition.

Fact #3: Transverse myelitis is a devastating condition, affecting the neurological system, caused by inflammation of the spinal cord, and can occur as a single condition or in the presence of another illness.

Fact #4: Symptoms include weakness of the extremities and lower back pain, and, as the condition progresses, numbness, paralysis, sensory loss, bowel, and bladder dysfunction may occur.

Fact #5: Recovering from transverse myelitis can be difficult. Rehabilitation is key in the recovery process and should be started as soon as the person diagnosed is medically cleared for activity.

To follow along with our Transverse Myelitis Awareness Month campaign, follow us on Facebook, Instagram and Twitter.

What Does TM Awareness Look Like?

We are mid-way through Transverse Myelitis Awareness Month, and we are blown away by the support and enthusiasm our community has shown for this cause! Throughout the last few weeks, we have been sharing information, resources, and stories on our social media platforms to bring awareness to TM, a rare inflammatory disorder that affects both children and adults and causes injury to the spinal cord. We compiled some of the highlights from our Awareness Month campaign below.

How can you join us in our effort to bring awareness to even more people about this disorder? Follow us on our social media platforms (see below for links), share our posts, and send us your story so that we can amplify your voice! Our first post of TM Awareness Month reached over 35,00 people on Facebook because of the many people who shared their stories and shared the post with friends and family. Our community is our greatest asset in spreading awareness for transverse myelitis, and with greater awareness comes more resources and better outcomes for those diagnosed.

Follow along with TM Awareness Month by following  us on Facebook, Instagram, and Twitter and sharing our posts!

TM Awareness Month: The Power of Community

June is packed with Transverse Myelitis Awareness Days that have been recognized by several states and countries over the years. To recognize these important dates and further shine light on TM and the journeys of all those who have been diagnosed with this rare disorder, we at SRNA have decided to make the month of June “Transverse Myelitis Awareness Month.”

In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people in the US. Having a rare disorder such as TM means you are more likely to be misdiagnosed, and some people go years without the correct diagnosis. It also means that many healthcare providers do not have experience with recognizing or treating TM. People who are diagnosed with TM often have to be their own best advocate and go to extra lengths to get the care they need. For all these reasons, awareness is an important tool for creating better outcomes for people with transverse myelitis.

How can you help to raise awareness for TM? The rare neuroimmune disorder community are some of the best advocates to be able to spread awareness, and there are several steps you can take to get involved. Below, we’ve listed five things you can do today to get involved and make a difference this Awareness Month and all year long.

Contact your legislators

One way to raise awareness is to contact your legislators. Legislators have the power to pass bills into law that will have a direct impact on people. Contact public officials and tell them your story. Tell them that you support policies that meet the unmet needs of individuals diagnosed with TM. Call on legislators to take action. Speak up and speak out to make a difference!

Take on a challenge

Another way to raise awareness is to take on a challenge. Pick something that you like doing. Do you enjoy playing sports? Take on an athletic challenge. Are you an artist? Challenge yourself to create five new pieces a day. Do you like to bake? Organize a bake sale. Make sure to share on social media why you’re taking on the challenge and how others can support you in your TM awareness journey.

Start a fundraiser

You can also start a fundraiser to help raise funds for TM research. Don’t underestimate your power to start a movement! Members of our community have done some pretty amazing things to raise money for transverse myelitis, and they’re thinking of new things to do every day. What can you do to help?

Share your story

An additional way to spread awareness is to share your story. By bringing the faces and voices of those living with TM to the forefront, we can empower our communities, researchers, physicians, and governing entities to understand this rare and life-altering diagnosis better. Share your story with us and we will feature you as part of the This is TM Me Campaign!

Spread the word!

Finally, help us get the word out about Transverse Myelitis Awareness Month! We will be posting shareable images and resources on our social media throughout the month. Help us spread awareness by sharing our social media posts and #ShareTheFacts during this month and beyond.

If you have any additional ideas for how to spread awareness for TM or want to write a blog post on how you’re raising awareness this month, please email us at [email protected]

Help us Plan the 2021 RNDS!

The 2020 Rare Neuroimmune Disorders Symposium (RNDS) took place on August 29, 2020. While the event was originally scheduled to take place in Salt Lake City, we partnered with our co-host, University of Utah Health, to adapt the program to a virtual platform due to the COVID-19 pandemic. The virtual element of the event allowed for participants to join from countries across the world without the difficulty and expense of travel. Participants from Australia, England, Canada, Austria, France, Germany, India, Ireland, Kenya, the Netherlands, Norway, Pakistan, Poland, Portugal, Qatar, Serbia, Singapore, Spain, Sweden, Turkmenistan, the United States, Venezuela, and Vietnam registered to attend. All the presentations are recorded and available to view on our website in the 2020 RNDS Resource Center.

The RNDS focused on 5 key things:

1) diagnosis
2) symptom management
3) COVID-19
4) treatment for recurrent disorders
5) connecting with members of our community

To cover questions about diagnosis, five talks, one about each disorder, were given, and these talks discussed the symptoms, diagnostic criteria, and acute treatments for each disorder. There were many questions about both the aquaporin-4 and MOG antibodies, how to determine if one is having a relapse, the differences between each of the disorders, and how to determine the correct diagnosis. There were also many questions about how to manage symptoms, such as spasticity, bladder and bowel dysfunction, pain, and visual issues. The COVID-19 pandemic was discussed, as participants had questions about the vaccines that were in development at that time (none had yet received emergency use authorization as of August 2020), as well as whether the virus (SARS-CoV-2) that causes COVID-19 could trigger an initial attack of TM or ADEM or a relapse in NMOSD or MOGAD. Participants also had questions about whether they are at risk for severe COVID due to their rare neuroimmune disorder. Treatments for recurrent disorders like NMOSD and MOGAD and recurrent TM were also discussed in-depth. This included the three newly approved drugs for NMOSD. Even though we couldn’t meet in-person, the platform we used for the RNDS (Hopin) allowed for one-to-one conversations through a networking feature. Furthermore, the chat was very active, allowing those in attendance to connect with each other as well as with medical professionals specializing in these disorders.

As we plan the agenda for our 2021 Virtual RNDS, we would be so grateful if you could fill out this survey to share your thoughts and help us plan the program. We hope we can meet in-person again in 2022.

We look forward to seeing you later this year!

Rare Disease Month

Today we’re kicking off our Rare Disease Month to raise awareness for over 400 million people affected by rare disease globally — which includes members of our community.

Having a rare disease is not easy. It is so much more than just a diagnosis. Finding support is difficult because not many people share the same diagnosis. The unanswered questions, the lack of experts nearby, the psychological and emotional challenges can be challenging. And the list goes on.

Rare diseases are often unknown and overlooked, falling through the cracks when it comes to research budgets and treatment development. People don’t seem to care enough.

We are here to prove the opposite. Because we —and you— do care. There is strength in numbers. If we, the public, patients, industry, regulators, policymakers, healthcare professionals, researchers, politicians, and advocacy organizations collectively fight for a brighter future for all those affected by rare diseases, we will transform the future for diagnosis and treatment of rare.

Follow us on Facebook, Instagram, and Twitter, and join us this month in sharing facts, your personal story, and raising awareness about your rare disorder. This month, we’re inviting you to share your story as part of the “This is Me” Awareness Campaign. By bringing the faces and voices of those living with rare neuroimmune disorders to the forefront, we can empower our communities, researchers, physicians, and governing entities to understand these rare and life-altering diagnoses better.