July is AFM Awareness Month!

During the month of July, we are recognizing Acute Flaccid Myelitis (AFM) Awareness Month. Throughout July, we will be amplifying stories and sharing information so that more people will know about the signs and experiences of those impacted by AFM. You can also get involved by attending the AFM Awareness Virtual Event, together with the Acute Flaccid Myelitis Association, where you can tune in to learn from guest speakers and connect with others in the AFM community. Awareness is of vital importance in helping those with rare disorders to receive an accurate diagnosis and receive the care they need.

Acute Flaccid Myelitis (AFM) is a rare neuroimmune disorder. The Orphan Drug Act defines a rare disease as a disease or condition that affects less than 200,000 people in the United States. Since 2014, the Centers for Disease Control and Prevention (CDC) has confirmed over 682 reports of those affected by AFM, which may be an underestimation because not all cases are reported. There was an increase in cases in 2014, 2016, and 2018 which may have been due to a respiratory illness that causes cold-like symptoms. Following that pattern, an increase was expected in 2020 which did not occur, possibly due to the additional precautions taken because of the COVID-19 pandemic. A projected increase also did not occur in 2021, and A quick and accurate diagnosis of AFM can lead to prompt acute treatment that may result in better outcomes. Until 2014, when surveillance for AFM began, many of those who experienced flaccid limb weakness and/or paralysis characterized by AFM may have been diagnosed with transverse myelitis or Guillain Barre Syndrome. Visit our AFM webpage to learn more about the symptoms, treatments, prognosis, and more for AFM.

We asked members of our community to share how AFM has impacted them, what challenges they have faced, and how they feel encouraged or supported. You can read some of their responses below.

“I have adjusted well to life after AFM even with some remaining paralysis and weakness. People are always shocked that I handle my diagnosis and disability in such good spirits. Some days it is painful to imagine the life we could have had if a virus had not interrupted our reality. I know there are things I wanted to do in life that will never be possible for me again, at least in the way I imagined. But every day I am incredibly happy to be alive and to have the love and support of those around me.”

-Adam S. Read more about Adam’s story.

“Marcella has nine siblings, so this illness has been a challenge for everyone in our family. We have adjusted to our new lifestyle, and we are extremely grateful that Marcella is still with us today. The whole family helps to make each day go by as smoothly as possible. Marcella was an active little girl who loved the outdoors playing with her siblings and dancing. She has accepted and adjusted to her new way of life immediately. We do not question “why” this happened. We take one day at a time and thank God for all our blessings.”

-Marcella’s Mom (Amy P.) Read more about Marcella’s story.

“My two-year-old daughter can no longer run or play like a toddler should be doing. It is so hard to see her just sit there and not be able to play with other kids. She was just beginning her independence and now that has been taken away. I want our life to be normal again. My hope is that she will be one of the success stories. That one day she will be able to walk, write and play again. But we just don’t know. No one knows, not even the doctors.”

-Kayla’s Mom (Sabrina B.) Read more about Kayla’s story.

“The biggest lesson I’ve learned is that it takes a lot of hard work to get over AFM, and I have to do my exercises and PT every day in order to get stronger.”

-August M. Read more about August’s story.

“There is so much more research that needs to be done on rare neuroimmune disorders. There is no cure, and the frontline medications were not guaranteed to stop the paralysis or reverse the damage. We were riding on prayers and hope. After the medications were administered only time would tell if Noah’s paralysis would reverse or improve. If recovery was possible, it would take time and lots of it. We have come a long way since October 3, 2014. I am happy to report Noah is walking with a gait trainer and has a very hopeful future in front of him. This was made possible by the quick actions of physicians who were educated (which is rare!) and knew about this rare disorder and their quick thinking. Most of all it’s possible because Noah works every day to gain back what AFM tried to take from him.”

-Noah’s Mom (Elisa H.) Read more about Noah’s story.

Finally, help us get the word out about Acute Flaccid Myelitis Awareness Month! Contact your legislators, organize a bake sale, start a fundraiser, or share your story. Help us spread awareness by sharing our social media posts and #ShareTheFacts during this month and beyond.

June is TM Awareness Month!

Tomorrow marks the beginning of Transverse Myelitis Awareness Month! Throughout the month of June, we will highlight members of our community who have been diagnosed with TM, share information about the disorder, and invite you to a TM Awareness Virtual Event. It is important to spread awareness of TM to help lead to faster diagnoses, more effective therapies, and better understanding.

Myelitis roughly translates to “spinal cord inflammation,” which can result from an infection or inflammatory cause. The term transverse myelitis (TM) has been adopted to describe inflammation of the spinal cord due to a misdirected immune response, resulting in varying degrees of weakness, sensory alterations, and autonomic dysfunction (the part of the nervous system that controls involuntary activity, such as the heart, breathing, the digestive system, and reflexes). Reports describing TM date back to the 1880s, but the first known use of “transverse myelitis” is in 1931, where it was used to describe inflammatory changes across the anatomical “transverse” plane seen on autopsy. The Transverse Myelitis Consortium Working Group provided a framework to delineate TM from non-inflammatory spinal cord disorders in 2002. You can read more about TM by visiting our information page and our Resource Library.

We asked members of our community who have been diagnosed with TM to share how their diagnosis has impacted them, what challenges they have faced, and how they feel encouraged or supported. You can read some of their responses below.

Some difficulties I had early on included the overwhelming feelings of “am I ever going to feel or be normal again?” Also how to navigate and learn about this rare neuroimmune disorder and how to support my body going through some crazy changes. I lost all bladder and partial bowel functions and was barely able to walk. I was so scared early on and everything in life had to go on hold until I was able to mentally and physically tackle getting better. I have learned that surrounding yourself with loving and supportive people is key and maintaining a positive attitude as much as possible. Also it’s okay to give yourself permission in small doses to feel anger, frustration, sadness, fear, and uncertainty.” – Carol Messenger

I have only partial capability from the neck down. Cannot walk unassisted. Limited fine motor control in my hands. Constant pain, spasticity, and fatigue. Most of the things I loved doing are unavailable to me now. But I love my life. My wife has been a tremendous support. I’m fortunate that my personality bends towards gratitude rather than despair. Just the way I’m wired.” – Scott Plutchak

I have made much progress over the years, but the struggle is very real on a daily basis. I battle depression, pain, and overall just accepting living life with a disability. I have learned to manage severe bladder dysfunction and numbness in my right lower extremities. I have very limited function of my toes and walk with a drop foot. I wear an AFO (Ankle Foot Orthosis) device on my right leg. Despite these major changes in my life, I have continued to push forward. I continue to pray for a full recovery, no matter what the outlook may be or seem.” – Cicely Anderson

In the beginning, I couldn’t move from the chest down. After plasmapheresis and IV steroids, I started to move and had to learn to walk again. Luckily for me, I had an awesome team at the rehab hospital and I left there with my walker. More therapy led me to just a cane. After 4 years, that’s where I am now. Reading stories from other TM warriors is one of my favorite things to do. I love seeing their journeys and how far they’ve come!! We can do anything if we put our minds to it!!” – Chery Begin

Everything I did was painful and I was told that I would recover in a couple of months. It was months later when I had to get my files from the hospital did I learn of my diagnosis. I was very frightened by the lack of communication with the doctors. I made an appointment with a specialist in neurology. I learned the facts about TM That was almost five years ago and I’m still partially paralyzed. I have good days and I have bad days. I was very depressed and finally, I decided to turn lemons into lemonade. In the summer of 2020, I received my certification as a professional aquatic exercise instructor. It’s the most rewarding job that anyone can imagine and I love what I do. Yes. I get tired of teaching from the deck, and back-to-back classes can be grueling, but I wouldn’t trade it for anything. I have so many people tell me how much their lives have improved and how much better they feel.” – Gordon King

Get involved in TM Awareness Month by following us on FacebookInstagram, and Twitter. Share our posts with family and friends to help spread information and stories! You can also get involved by sharing your own story through our This is Me campaign. By working together as a community, we can bring awareness to TM and improve the lives of those who have been diagnosed with this disorder.

May is ADEM Awareness Month!

Today marks the beginning of Acute Disseminated Encephalomyelitis (ADEM) Awareness Month! Throughout the month of May, we will highlight members of our community who have been diagnosed with ADEM, share information about the disorder, and invite you to an ADEM Awareness Virtual Event. It is important to spread awareness of ADEM to help lead to faster diagnoses, more effective therapies, and better understanding.

ADEM is a rare inflammatory demyelinating disease of the central nervous system. ADEM is thought to be an autoimmune disorder in which the body’s immune system mistakenly attacks its own brain tissue, triggered by an environmental stimulus in genetically susceptible individuals. In most cases, ADEM is believed to be triggered by a response to an infection, or much less likely, to a vaccination. For this reason, ADEM has sometimes been referred to as post-infectious or post-immunization acute disseminated encephalomyelitis. You can learn more about ADEM by visiting our information page and our Resource Library.

Below are some quotes from some of our Hope Ambassadors who have been diagnosed with ADEM. You can read their full stories on our Hope Ambassadors page.

“Every day, I feel incredibly grateful to be surrounded by unimaginably bright, supportive, and inspiring people who believe in my potential to become a doctor. They are my family away from home. There aren’t enough words to express how grateful I am for everyone and everything that has happened to get me to where I am today. The most difficult part about living with a rare neuroimmune disorder for me is its invisibility.”

– Huy Tran

“To date, Victoria has had over six surgeries, and counting, and is doing amazingly well. She has been fortunate enough to keep up with her peers academically and continues to overcome all obstacles. She has defeated all odds, and as her parents, we couldn’t be prouder!”

– Pimbii Kaura, Victoria’s mom

“I’ve always worked hard, and I am a competitor. I will never give up. This last spring I rode a bike for the first time in nine years. On a tandem bike with my fitness trainer, Emily from Turnstone, we rode 10 miles. I’m not swimming yet, but I love going to the beach. Miles and I are still avid sports fans; even if we are sometimes rooting for different teams. I’ve been able to meet with St. Mary’s and Notre Dame classmates at ND football games. I even got a pre-game tour of the ND locker room. I’ve been a bridesmaid in a high school friend’s wedding.”

– Ashley Harrington

Get involved in ADEM Awareness Month by following us on FacebookInstagram, and Twitter. Share our posts with family and friends to help spread information and stories! You can also get involved by sharing your own story through our This is Me campaign. By working together as a community, we can bring awareness to ADEM and improve the lives of those who have been diagnosed with this disorder.

April is MOGAD Awareness Month!

Tomorrow marks the beginning of MOG Antibody Disease Awareness Month! Throughout the month of April, we will highlight members of our community who have been diagnosed with MOGAD, share information about the disorder, and we invite you to a MOGAD Awareness Virtual Event. It is important to spread awareness of MOGAD to help lead to faster diagnoses, more effective therapies, and better understanding.

MOGAD is a recently coined neuro-inflammatory condition that preferentially causes inflammation in the optic nerve but can also cause inflammation in the spinal cord and brain. Myelin oligodendrocyte glycoprotein (MOG) is a protein that is located on the surface of myelin sheaths in the central nervous system. While the function of this glycoprotein is not exactly known, MOG is a target of the immune system in this disease. The diagnosis is confirmed when MOG antibodies in the blood are found in patients who have repeated inflammatory attacks of the central nervous system. You can learn more about MOGAD by visiting our information page and our Resource Library.

We asked members of our community who have been diagnosed with MOGAD to share how their diagnosis has impacted them, what challenges they have faced, and how they feel encouraged or supported. You can read some of their responses below.

“Luke has severe cognitive dysfunction and fatigue from his multiple relapses, and this makes schoolwork and learning really difficult for him. Despite these obstacles, he has learned how strong and courageous he is and that he can handle anything that comes his way! He has his family and a whole community of people cheering him on and supporting him! He is so loved! He finds inspiration from accomplishing things that are hard, but he overcomes them anyways! Luke never gives up and will always fight MOGAD!!

MOGAD is a chronic illness with many challenges, but with the right research and support, all who have it can still thrive!”

– Caitlyn Rester, mother of Luke

“Life in general is difficult, everyday simple things aren’t so simple and trying to get people to understand seems impossible. My parents have supported me the most. The biggest challenge I face is daily life and knowing the future, since I can’t plan anything because I don’t know how I will feel.”

– Tom Beaulieu

“My daughter was diagnosed at age 3, she is now 6 and healthy. With MOG being so new, we went to more doctors’ appointments than we can even begin to count before she was hospitalized for a week. She had a spinal tap, multiple MRIs, and multiple blood draws, along with being on a high dose of steroids due to an eye turn. It has been difficult not knowing too much about it and whether it will come back.”

– Sierra Nelson

Get involved in MOGAD Awareness Month by following us on FacebookInstagram, and Twitter. Share our posts with family and friends to help spread information and stories! You can also get involved by sharing your own story through our This is Me campaign. By working together as a community, we can bring awareness to MOGAD and improve the lives of those who have been diagnosed with this disorder.

March is NMOSD Awareness Month!

Today marks the beginning of Neuromyelitis Optica Spectrum Disorder (NMOSD) Awareness Month! Throughout the month of March, we will highlight members of our community who have been diagnosed with NMOSD and share information about the disorder. It is important to spread awareness of NMOSD to help lead to faster diagnoses, more effective therapies, and better understanding.

NMOSD is a rare relapsing autoimmune disorder that preferentially causes inflammation in the optic nerve and spinal cord. It is sometimes referred to as Devic’s Disease, as it was first described by Eugène Devic in 1894, and he coined the term “neuro-myélite diffuse aigüe.” It is typically characterized by longitudinally extensive transverse myelitis (LETM, myelitis which is 3 vertebral segments in length or greater) and unilateral or bilateral optic neuritis. Individuals can present with short lesions as well though. You can learn more about NMOSD by visiting our information page and our Resource Library.

We asked members of our community who have been diagnosed with NMOSD to share how their diagnosis has impacted them, what challenges they have faced, and how they feel encouraged or supported. You can read some of their responses below.

“In the beginning, it was difficult to deal with the fears of what could happen and how the symptoms could worsen, rather than experiencing and dealing with the real symptoms. What has changed is my awareness of the actual experience. It’s not about interpreting the experience as good or bad, but just being in it. It is a lot about just accepting the physical limitations the disease can bring.

I feel safe and protected in all of this. Within me, I have a place from which I can make reliable, trustworthy decisions, and this is very empowering and encouraging. I have learned a great deal about what it means to adapt to certain circumstances and, again, to limitations. What’s also important for me is that I have a doctor who I feel very comfortable with. She’s someone I trust and I can talk to.”

– Alexandra Goulimi

“Sleeping and walking have been difficult. I’m not alone with NMO. Family and church family have been with me this far. Walking has completely stopped. Hearing others’ story has given me hope.”

– Ashley McCleskey

“It has been very difficult to have lost my independence. I was over 40 years old when I was diagnosed with NMO. I have learned to have more patience, find a hobby, and to write more. My husband of 25+ years and our adult children have been my BIGGEST supporters! My challenge is learning to ask for help when needed. My faith is what has encouraged me more every day.”

– Cindy Barrientos

“The altered sensations caused by the damage on my c-spine to the left side of my body have been difficult to get used to. The hyper nerve sensitivity, numbness, and feeling of the weight of my left leg have altered how I do things and interact with others. I don’t like to be touched anymore as it sends fireworks through my body when someone touches my left side, and I used to be a big hugger. Living with this disorder has definitely made me a stronger person as I do not let it define me. I take my bad days as my body demands rest and maximize my good days to the best of my ability. Fortunately, my family has been very supportive. What’s challenging is, from the outside, people see me and I could look very normal to them. They don’t understand the constant pain, fatigue, and discomfort I live with. I am encouraged that the medicine I am taking has stopped any further progression. It was a lot of trial and error when I first got sick 8 years ago with different drug therapies and the debate between an MS or NMOSD diagnosis. The last 2 years have definitely been good for what it is.”

– Darlene Mueller

Get involved in NMOSD Awareness Month by following us on Facebook, Instagram, and Twitter. Share our posts with family and friends to help spread information and stories! You can also get involved by sharing your own story through our This is Me campaign. By working together as a community, we can bring awareness to NMOSD and improve the lives of those who have been diagnosed with this disorder.

Connecting through Sharing Stories during SRNA’s Rare Disease Month

We’re a little over halfway through SRNA’s Rare Disease Month! Throughout February, we are spreading awareness of rare neuroimmune disorders and the challenges that come with being diagnosed with a rare disease. We asked members of the SRNA community to share how their diagnosis has impacted them, what challenges they have faced, and how they feel encouraged or supported. You can read some of their responses below.

“There have been so many challenges of varying degrees. Because AFM is so rare and not known, there have been many challenges related to getting insurance approvals, needing to jump extra hurdles with letters of medical necessity, routine assessments, etc. There is often the need to share her journey with doctors, therapists, insurance companies, etc. in order to get her the proper care and resources. Also, one of our challenges as she has gotten bigger is how to help her integrate into life with peers and others in different environments. Initially, with a tracheostomy, caretaking itself was a huge challenge – it was demanding and tiring. And trying to help her brother and sister learn how to have conversations with their peers and others about their sister’s diagnosis and how it has impacted their sister’s life and abilities has been a challenging process.”

– Gretchen Trimble, mother of Opal, AFM

“The most difficult thing for me has been learning to accept that this is my new normal. I have learned that making the best of each day is the best coping method for me. I am incredibly fortunate to have an amazing husband who makes me laugh each day and is right by my side, ready to help me with anything. I am also truly blessed with a very supportive family and medical team. The biggest challenge is although I can walk and do many things, people cannot see the internal damage that TM has done and continues to do. Simple tasks are difficult (cannot dress without help or even wash my hair) as well the pain and exhaustion levels that never end. I do realize how much worse it really could have been, so for that I am grateful.  Staying positive can be a challenge, but the alternative is not going to help anyone.  I am very encouraged by the good work that SNRA is doing on behalf of people who have been affected by these rare disorders.”

– Nancy Warner, TM

“My NMO diagnosis has completely changed my life. At the moment, I cannot walk due to weakness in my legs, and I have gone from being completely independent to having to rely on others for almost everything. I have learned that I am not as mentally strong as I thought. My family and friends have been my support. They continue to encourage me.”

– Susan Smith, NMOSD

“Even though Luke is rare, there are still many people who are just like him, and he is not alone!”

– Caitlyn Rester, mother of Luke, MOGAD

In the coming weeks and months, we will continue sharing stories and information to increase awareness about rare neuroimmune conditions. Also, there is still time to register for our SRNA Rare Disease Day Support Group Meeting and to get involved with our Rare Do Care Walk-Run-N-Roll! Another way to join in on Rare Disease Month is by sharing how a rare neuroimmune diagnosis has impacted you by filling out this form. Follow along on our social media platforms – Facebook, Instagram, and Twitter – where we are posting information and stories throughout the month. Help us by sharing our posts and raising awareness of these disorders.

Get Ready for SRNA’s Rare Disease Month this February!

The month of February begins next week, which means that SRNA’s Rare Disease Month is around the corner. During SRNA’s Rare Disease Month, we will raise awareness for the rare diseases that affect over 300 million people across the world by sharing stories, resources, facts, and helpful tips during the entire month of February.

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 all be challenging. This is why it is critical to advocate for change and awareness. We are here to show that there is strength in numbers.  As we collectively fight for a brighter future for all those affected by rare diseases, we will transform the future for diagnosis and treatment of rare.

This year, we are excited to announce that we will be hosting a virtual “Rare Do Care” Virtual Walk-Run-N-Roll Challenge! Celebrate Rare Disease Month with SRNA by joining the challenge. Between now and February 28th, log your miles as you walk, run, or roll in your neighborhood. You get to choose the distance you go and how you’ll get there!  Walk, run, or roll your way to your goal – and raise money and awareness along the way! You can sign up to join the challenge here.

On February 14th, we will celebrate Carentine’s Day, a day in which you can show your support for the SRNA community and our mission. Although Valentine’s Day is often thought of as a celebration of romance, love can take many different forms. It is found through community, friendship, and family. It is expressed through empathy, support, and caring. You can find out more about SRNA’s Carentine’s Day campaign and how to get involved here.

The awareness month will culminate on February 28th,  with a special support group meeting for Rare Disease Day. Join from anywhere in the world and connect with others in the SRNA community! The meeting will include a presentation by Sadie Kleiman LMSW, a Social Worker and Educator from the Barrow Neurological Institute, on “Accessing Resources for Individuals with Rare Diseases.”  Learn more and register to attend here.

Finally, follow us on FacebookInstagram, and Twitter, and join us this month in sharing facts and raising awareness about your rare disorder. Also, 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.

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