International Day of Persons with Disabilities

By GG deFiebre

When I was first diagnosed with transverse myelitis and in the hospital, I had zero desire to interact with anyone else with a disability. I had been taught by society that disability was bad, that it was undesirable. I would not have willingly identified myself as disabled in the beginning. I rejected it. I worked so hard in rehabilitation therapy to get back to “normal.” As I began to adjust to my new life as a wheelchair user, as someone with a permanent disability, I really had to fight hard against the internalized ableism I felt. I had to learn to see myself as worthy – a powerful act in a world that sees disability as a flaw, something broken to be fixed. I had to teach myself that my worth as a human being was not determined by whether I was walking or rolling, whether my hands worked or not. I am still teaching myself that, even 11 years later.

Today, December 3rd, 2020, is International Day of Persons with Disabilities. According to the United Nations website, “The annual observance of the International Day of Disabled Persons was proclaimed in 1992 by United Nations General Assembly resolution 47/3. It aims to promote the rights and well-being of persons with disabilities in all spheres of society and development, and to increase awareness of the situation of persons with disabilities in every aspect of political, social, economic and cultural life.”

According to the World Health Organization, one billion people, or 15% of the world’s population, are living with a disability. The disability community is a group any of us can join at any time, just like I did 11 years ago, and chances are, if you live long enough, you will eventually have some type of disability.

Disabled people still face enormous barriers accessing the world. People with disabilities are less likely to access education, health care, and employment than those without disabilities. The COVID-19 pandemic has certainly not helped the situation either. Disabled people also took note when things we have been asking for and were denied access to, like remote work and learning, were quickly adopted when it impacted able-bodied people. People with invisible disabilities often face discrimination when their disability is misunderstood or not believed by employers, friends, family, and strangers.

For those who do not identify as disabled, be sure to read about the history of disability activism, listen to and elevate the voices of those with disabilities, including those with invisible disabilities, and think actively about how your life and access to things might be different if you had a disability. Challenge your perceptions of disabled people.

If the world wasn’t so hostile to people with disabilities, maybe I wouldn’t have been so quick to dismiss identifying as disabled when I was first diagnosed. It has taken a long time, but I am proud to be disabled.

Happy International Day of Persons with Disabilities!

The Best Time for Giving Thanks

2020 has been a complicated year for people across the world, including many in our community. However, during this unprecedented time, we have been able to find positivity in the work that we do and the community we serve. We at SRNA are incredibly thankful for the support of our members, who have come together and found creative ways to connect and help one another. We are also grateful for our medical professionals, who have worked tirelessly throughout the past year to keep our community informed on the latest updates on the pandemic and coping with the stress of all the new challenges it brings.

This year, we give thanks to you, our community, for staying strong and spreading hope. We wish for you and your family to stay safe and healthy, and we wish you a very Happy Thanksgiving!

In the spirit of giving during this holiday season, we are excited to announce that SRNA has received a matching donation of $33,000 for our upcoming #GivingTuesday campaign! Every year, the Tuesday after Thanksgiving is designated as a day of giving to support nonprofits that benefit you. This year, Giving Tuesday will take place on December 1st. Join us in advancing research in rare neuroimmune disorders, supporting those who are diagnosed and their families, and training new clinician-scientists to specialize in these disorders. Every contribution we receive on Giving Tuesday will be matched dollar-for-dollar up to $33,000, and we need your help to spread the word!

Here are some ways you can get involved:

1. Join our Giving Tuesday Facebook Fundraiser

2. Create your own Fundraiser on Facebook

3. Donate directly through our website (international supporters can do so here)

4. Create a Fundraiser on our website to share with friends and family

The funds we raise on Giving Tuesday will be critical in continuing our mission of supporting those with ADEM, AFM, MOGAD, NMOSD, ON, and TM, as well as their families and caregivers through support group meetings, symposia, family camp, podcasts, educational resources, our Myelitis Helpline, and much more. These funds will also help advance research into better understanding these disorders and ways to treat them.

Please help us continue this work by offering your support on December 1st if you can. We are grateful for every contribution we’ve received this year, and we understand the financial strain this pandemic has caused on so many families. Every donation, big or small, helps us in our fight to end rare neuroimmune disorders, together.

— The Siegel Rare Neuroimmune Association

The 2020 SRNA Fall Magazine

The last few months have been a challenging time due to the COVID-19 pandemic, and we at SRNA have worked to find creative ways to continue our programs and services that meet the critical needs of our community. As support group meetings and educational events have shifted to virtual platforms, we still work to connect with one another and provide the support that is central to our mission. Today, we are proud to share news and updates from the last few months in our Fall 2020 Magazine.

In the Magazine, you can read about the first Virtual Rare Neuroimmune Disorders Symposium (RNDS), which was held in August. While we were disappointed to cancel the in-person event at the University of Utah Health, we were able to partner with the University to bring the event online, which allowed a broader global audience to attend. Also, you can learn about the three new FDA-approved medications for maintenance in neuromyelitis optica spectrum disorder. The likelihood of recurrent disease activity is greater than 90% for individuals diagnosed with NMOSD, but maintence medication can help prevent relapses and damaging long-term impacts from recurrence.

Did you know that SRNA has an AFM Physician Consult and Support Portal? Established in May 2019, the portal connects physicians treating patients with suspected or confirmed AFM diagnoses to experts who can provide information and resources. You can also read about the 2020 AFM Virtual Symposium organized by the AFM Working Group, Johns Hopkins Medicine, and the Kennedy Krieger Institute, which consisted of five parts and included presentations from experts across the United States.

Many SRNA Family Camp attendees are familiar with Dr. Jonathan Galli, a neurologist who recently completed his James T. Lubin Fellowship in the rare neuroimmune disorders. Read about his experience completing his Fellowship at the University of Utah Health. You can also read about the Wisconsin Walk-Run-N-Roll, which was pivoted to a virtual event due to the pandemic. Maleah Moskoff, a support group leader and Hope Ambassador for SRNA, organized the event and raised $4,000!

You can read more of the latest news and updates from SRNA in our Fall 2020 Magazine here.

Update on transverse myelitis and vaccine development for prevention of SARS-CoV-2 infection (COVID-19)

We have been following recent news reports that AstraZeneca has confirmed that clinical trials assessing its Oxford University partnered coronavirus vaccine AZD1222 have resumed in the UK, following a green light by the Medicines Health Regulatory Authority (MHRA). The trial is still on hold in the United States. As we shared in an earlier blog post, we still do not have official confirmation of the diagnosis of transverse myelitis, or details such as whether it is partial or longitudinally extensive transverse myelitis, what the MRI and antibody testing findings are, and what the CSF (cerebrospinal fluid) showed. These events continue to be of great importance to our organization and our community. We have been reaching out to experts in our medical professional network and the NIH, and we know they are all asking the same questions we are to understand the safety and efficacy of these vaccine development trials.

For those in our community who would like to learn more about the different types of vaccines being developed and about COVID-19 and rare neuroimmune disorders, Dr. Benjamin Greenberg gave a talk at the 2020 Regional Rare Neuroimmune Disorders Symposium on “COVID-19 and Rare Neuroimmune Disorders.” Please view the complete recording of his talk here.

We will continue to follow the situation and update our community as we learn more.

The 2019 SRNA Distinguished Service Award Recipients

Our organization was volunteer-led for nearly 20 years, and volunteers are still the backbone of much of what we do. Our volunteers play an important role in how we connect and care for our members.

This tradition is what led to the creation of the SRNA Distinguished Service Award. This award is an opportunity for us to shine a light on our volunteers and recognize them for their passion. Volunteerism empowers individuals to find their purpose and create meaningful change. These tireless advocates spend hours outside of their job or away from their families; they make phone calls and answer emails from people in need; they reach out to their friends and neighbors for sponsorships and donations; and, above all else, they work to create a strong community for everyone affected by rare neuroimmune disorders.

None of our work would be possible without our volunteers.

Earlier this year, we asked for nominations for this award from our members. We wanted to hear from you about which SRNA volunteer had made a difference in your life. As responses came in, we established a panel to decide a “winner.” But in the end, this wasn’t about one person. Each volunteer brought something notable – something that our organization needed – something that changed someone’s life. And how do you value one act of service over another? So, the decision was made to recognize all those that were nominated that met the established criteria.

It gives us the utmost honor to announce the recipients of the 2019 SRNA Distinguished Service Award: Janelle Healy and Jay Hewelt, Barbara Nichols, four of The MOG Project members (Julie Lefelar, Peter Fontanez, Andrea Mitchell, and Cynthia Albright), our friends in Arizona (Gail Buch, Kate Krietor, Julie Barry, Barbara Sattler, and Kimberly Mazur), and Laura Martin.

Each of these deserving volunteers devoted an incredible amount of time, energy, and care throughout 2019.

Please continue reading to learn more about each of these amazing awardees.

Janelle and Jay attended a support group in Santa Monica in 2018. Janelle had a transverse myelitis diagnosis, and she and Jay drove the three hours from San Diego to meet others. From that day on they committed to being a part of our organization. They became support group leaders of their own, attended fundraising and awareness events, symposia, and made contact with individuals newly diagnosed. Janelle excels at making connections with our community, and her spirit makes her instantly relatable. Jay’s support of her throughout her diagnosis is an example for partners everywhere.

“Janelle has been a very welcoming and positive support to my husband and I as we try to understand how best to help our son who has ADEM. She has been candid and forthcoming about the realities of living with TM issues. She is a wonderful listener and very knowledgeable about where to find information that we can access to better understand living with the effects of ADEM.”

Barbara Nichols is a support group leader in the Dallas-Fort Worth area. Barbara has been involved for many years – organizing Walk-Run-N-Rolls, hosting support group meetings, participating in patient advocacy panels, reaching out to newly diagnosed people, and so much more. We are constantly amazed at her willingness to say yes to just about anything we ask and the compassion and care with which she tackles each request. In 2019, she held six support group meetings, including her sixth anniversary one. Her meetings are always education focused – often including healthcare professionals from UT Southwestern, but she always makes time to listen to others and hear their experiences.

“Barbara has been a true inspiration to the community and has worked selflessly to create a community where folks can come and share their stories, forge lasting friendships, and listen and learn from each other, as well as the many experts who she engages to shine the light on rare neuroimmune disorders. Barbara reaches out to those who are newly diagnosed through phone calls and emails and ensures that they know they are not alone and have a place to come to learn more about these disorders.”

Julie Lefelar came to us in 2018 with the goal of bringing awareness to a new disorder – myelin oligodendrocyte glycoprotein antibody disease (MOGAD). Since then, she and her fellow volunteers have made a huge difference in the world of MOG and SRNA in general through support group meetings, two Walk-Run-N-Roll events, and other fundraisers. Julie is a support group leader for the Baltimore and surrounding area; Andrea is a support group leader in Northern California and regularly hosts meetings with Dr. May Han at Stanford University; and Peter is an SRNA support group leader in the Orlando area. Cynthia organized the 2019 Maryland Walk-Run-N-Roll and was a co-organizer of the 2019 Washington, D.C. Walk-Run-N-Roll. Their commitment to our community and specifically, the MOGAD community is extraordinary.

“Julie is passionate about educating and supporting the community – always looking to raise people’s spirits, which is so important when dealing with chronic disease. Her volunteer work is very close to her heart and it has truly changed her life, and I know she hopes to make the same impact for others as well.”

“Peter has put many hours into MOGAD and ADEM information and podcasts. He goes out of his way to help people who are newly diagnosed with MOGAD and/or ADEM, finding them through social media, pointing them to the experts from the SRNA website and the SRNA information available. He truly cares about these people and helping them.”

“Andrea’s support group and partnership with Stanford University has meant so much to the people in Northern California. Her meetings typically have about 20 attendees who then get direct access to a neurologist trained in these disorders. I can’t begin to imagine the amount of education and relief that has brought.”

“Cynthia worked extraordinarily hard…and because of her efforts, everyone had a wonderful time at the events as well as being able to connect with other patients with similar illnesses. She is an SRNA Hope Ambassador as well, which reflects her dedication to others suffering with MOGAD.”

In 2017, a few members from Arizona met on their way to the RNDS. None of them knew each other before then, but they returned home determined to work together to make a difference in their state. Since then, the group has grown, but the mission remains the same – create awareness and education in Arizona. In 2019, they did just that. They organized and held the second annual Arizona Walk-Run-N-Roll, established a new support group in the Phoenix area, and began a partnership with Barrow Neurological Institute that increased our reach.

“Without Gail we wouldn’t have had the Arizona Walk-Run-N-Rolls. She was instrumental in designing the first one in Phoenix and then helping in Tucson. She traveled around the state to make it a success. She is an excellent voice for SRNA in and out of our community.”

“Kate was all in from the beginning. She may seem reserved to those that don’t know her, but that’s how she gets things done. What Kate does as a volunteer is done for the benefit of the community, not for any personal accolades.”

“Julie is compassionate. She wants to bring everyone in. Her work with the Tucson Zoo led to one of the coolest Walk-Run-N-Rolls. It was amazing to share in that experience with her and to see the joy it brought her and the community.”

“Even though our support group is small, Barbara is always there for us. She is always helpful. Her wisdom and humor help make her a vital part of our community.” [Barbara also writes novels about her time as judge and donates proceeds to SRNA. Check them out here.]

“Kim’s son, Jordan, has transverse myelitis. In 2018, Team Jordan brought dozens of family and friends to the first Walk-Run-N-Roll. No one had met Kim or Jordan until that day, but by the next year she was driving to Phoenix to attend meetings with Barrow Neurological and flying across country to attend the 2019 RNDS. Her love of Jordan has led her to speak at events and help raise awareness.”

Laura Martin has spent countless hours contributing to the look and feel of this organization by creating the beautiful illustrations you see on our website and our communications. We entered into 2019 with an idea that we wanted to change the name of our organization to encompass all those with rare neuroimmune disorders. Laura volunteered her time and skills (and still does so today) to help us have a branding that is beyond what we could have imagined. Her talent is only eclipsed by her genuine support of our cause and our community.

“Laura’s contributions are invaluable.  She creates visual concepts to communicate information and ideas in a meaningful and inspirational way.”

Our volunteers are core to our mission. We look forward to more members of our community joining us in our goal to improve the lives of families and individuals who have been diagnosed with rare neuroimmune disorders.  We recognize our 2019 SRNA Distinguished Service Award winners who are exemplary of what can be accomplished by a person willing to make a difference in other’s lives.

Transverse myelitis and vaccine development for prevention of SARS-CoV-2 infection (COVID-19)

We at the Siegel Rare Neuroimmune Association (SRNA) have been made aware of a volunteer participating in an AstraZeneca SARS-CoV-2 vaccine trial being potentially diagnosed with myelitis. At this time, we do not have official confirmation of the diagnosis of transverse myelitis, and it is unclear if the event was related to the vaccine or not, but it’s of obvious importance to our rare neuroimmune disorder community.

Neurological complications associated with the development of vaccines have been described in the past. It has occurred in the development of vaccines for other viral infections such as rabies, Japanese encephalitis, yellow fever, and H1N1. Vaccine development requires a rigorous and comprehensive assessment of the vaccine candidates, safety, risk, and benefits. The reason clinical trials are pursued in a rigorous fashion is to prove the safety, efficacy and relative risks of an intervention. The information being released about the current study is reassuring that safety oversight protocols are working, and clinician-scientists are monitoring events as they occur to ensure vaccine development is beneficial and safe for public health. What is needed now in the development of a vaccine for prevention of SARS-CoV-2 infection and COVID-19 is to evaluate the magnitude of the risk and identify strategies to minimize such risk.

Current Phase 3 clinical trials are evaluating and assessing to determine which vaccines and strategies would be the safest and most effective to immunize against SARS-Cov2 infection. We will continue to monitor the outcomes, data, and safety records of the various vaccines being developed and update you as we learn more.

For more information about transverse myelitis, please click here.

For more information about COVID-19 and rare neuroimmune disorders like transverse myelitis, please click here.

This statement has been approved by Dr. Benjamin Greenberg, Dr. Carlos A. Pardo, and Dr. Michael Levy, members of the SRNA Board of Directors and SRNA Medical and Scientific Council.

For any questions or more information, please email info@wearesrna.org.

The 30th Anniversary of the Americans with Disabilities Act

This Sunday, July 26th marks the 30th anniversary of the Americans with Disabilities Act (ADA) being passed into law. Prior to this law, there were large gaps in federal regulations that protected the rights of people with disabilities in the United States. In the late 1986, the National Council on the Handicapped (now National Council on Disability, or NCD) published a report entitled “Towards Independence” in which they identified key areas in which people with disabilities were not receiving equal treatment. The report also proposed that legislation to protect the rights of the disability community was needed.

The ADA of 1990 has five sections covering Employment, State and Local Government, Public Accommodations, Telecommunications, and Miscellaneous Provisions. Some of the major points of the ADA are mandating the accessibility of public spaces and transportation, creating equal opportunities for employment and schooling, ensuring that individuals with hearing and speech disabilities have access to telecommunications, and overall requiring accommodations for people with disabilities so that they may be afforded the same opportunities and rights as Americans without disabilities. The ADA has been amended since its passing and has been interpreted in several Supreme Court cases. For a full timeline of the ADA, visit the ADA National Network’s page.

Many members of the SRNA community identify as having a disability, and the ADA has helped ensure the rights of our community members living and travelling in the United States. At the 2019 Rare Neuroimmune Disorders Symposium, we hosted a workshop on ADA, Disability, and Benefits, which you can view here. While the U.S. has come a long way in ensuring the rights of people with disabilities since 1990, there are still areas of improvement. Earlier this year, a member of our community, Liv Bender, wrote about her struggles with accessibility in New York City, which you can read about here. As we reflect on the last 30 years of the ADA, we look forward to the future of advocating for our community and all those who deserve equal access and opportunity.

If you are interested in learning more about the ADA and what rights are ensured under it, the ADA National Network has a free online course aimed at increasing knowledge of the ADA. You can learn more and register here.

Two Updates on COVID-19

Interview with Dr. Michael Levy on His Experience Treating COVID-19 Patients

Over the past few weeks, a neurologist on SRNA’s Medical and Scientific Council, Dr. Michael Levy, was assigned to a COVID-19 unit at the Chelsea HealthCare Center in Massachusetts. Although neurologists are not usually the first physicians treating people with COVID-19, the Chelsea HealthCare Center was in need of extra physicians to cover the influx of COVID-19 patients. SRNA’s Associate Director of Research and Education, GG deFiebre, recently interviewed Dr. Levy on his experience at the Chelsea HealthCare Center. You can view the interview and read the transcript below.

Dr. Michael Levy is an Associate Neurologist at Harvard Medical School. He is the Director of the Neuromyelitis Optica Clinic and Research Laboratory, and Research Director in the Division of Neuroimmunology and Neuroinfectious Disease at Massachusetts General Hospital. Dr. Levy specializes in taking care of patients with neuroimmunologic diseases including multiple sclerosis, transverse myelitis, optic neuritis and neuromyelitis optica. In the laboratory, Dr. Levy’s research focus is on the development of neural stems for regenerative therapy in these diseases. He uses rat and mouse models to test the survival, differentiation and functional capacity of human neural stem cells to improve neurologic function in post-inflammatory conditions. The goal of his laboratory and clinical effort is to translate the basic science stem cell work to a human trial in transverse myelitis and other neuroimmunologic diseases.

Dr. Michael Levy: [00:00:06] I was assigned to duty in the coronavirus clinic in Chelsea, Massachusetts, which is a hotspot of Boston where I think,almost up to a third of residents have been exposed to the virus, and at least either developed immunity to it or have been sick. There’s a clinic there, mostly, almost entirely staffed by internists, pulmonologists and other primary care physicians. But they needed all hands on deck, and they asked every department to contribute a few people, and I got summoned.

[00:00:38] And I show up there, and first thing they do is they teach me how to gown my personal protective equipment from top to bottom. There’s somebody there who makes sure that in between every patient, as I disrobe and put on my new gown, that I’m completely covered, even my back. And they tape me up and everything, so they take every precaution. But we do reuse our N95 masks, it’s pretty much stuck to my face all day long. And then we have goggles and everything to cover up.

[00:01:08] So then we get assigned 20-minute slots per patient. I’d say that a few weeks ago when I started, most of the cases were identical. It was just, “I have fevers, I have shortness of breath, I have a cough, and I can’t smell.” And they came in for testing, and as long as they met certain criteria by the state, they were eligible for testing. Those criteria have relaxed over time, and so now, all you have to have is one symptom. A single symptom. You don’t have to have an underlying disease or anything, in the state of Massachusetts at least. And so patients would come in, get tested and, on average, at the Chelsea Health Clinic, about 40% were positive. So it was a really, really high rate.

[00:01:53] But what I really want to mention is that, over time, the patient population has changed. It’s no longer just, “I have these symptoms and I want to come in and get tested.” I would say that more than half are people who’ve already been tested, tested positive, and are coming back in because they’re having problems. So, the ones who are fine, who get the infection, they want to know they have it, they test positive, we tell them to quarantine, they go home. We don’t necessarily hear from them much anymore. Now, what we’re seeing are the folks who are getting sick, who need more intensive care.

[00:02:30] So we’ve been hospitalizing some of them, the ones who have abnormal vital signs. And then, a lot of them have super infections, so then we get a chest x-ray, we see an additional infection on top of the coronavirus pneumonia. And so then we can treat that at home. So it’s been a little bit of a shift.

[00:02:48] And then this week, several of my shifts were canceled because patients are not making as many appointments. So that was a hotspot, Chelsea, Massachusetts, and I think there’s going to be these hot spots that move around the country, and every community will go through it. And, the good thing is that as long as it doesn’t overwhelm the health system, then it’s okay that people come in and get the care that they need, and then we can treat them and then they can go home. And there is a herd immunity that develops so that they provide protection to their neighbors and loved ones.

[00:03:30] And, I think, ultimately, this is just my prediction, is that every community is going to have to go through this. They’re just going to all have to deal with the widespread infection. The ones who need care, need to get care and the ones who can handle it at home, just go home and deal with it. And then over time the community will build immunity to it. That’s my sense of how this is going.

GG deFiebre: [00:03:53] Is the clinic a walk-in clinic? Do the people make appointments? And was it people coming in with more mild symptoms getting tested? What was the setup?

Dr. Michael Levy: [00:04:06] Yeah, it’s full spectrum. So if all you want is a test now, I don’t know if you’ve seen on the news, they have these nurses and providers behind plexiglass with these arms that stick out. So that they can do multiple nose swabs without having to change their gowns. And so, we have that on the first floor. So, if you’re a walk-in, you just want to come in and get tested, that’s where you go. If you walk in and you don’t look healthy, and there are people there who kind of check on everybody, even if you’re standing in line, if you look like you’re having some shortness of breath, you get moved up. And so that’s the second floor, where I’m stationed.

[00:04:42] And they know I’m a neurologist. They’re not going to give me the most difficult cases. And then we have sort of the third-tier clinic, which is where if you have underlying conditions like heart disease, lung cancer, something like that, then you really need intensive care. They’re going to be assigned somebody who has that expertise, like a cardiologist or a pulmonologist.

[00:05:04] And so it’s a full spectrum clinic, and there’s basically around-the-clock ambulance drivers that take patients, I’d say maybe two per hour, that type of thing, that are just taking patients to the hospital, not necessarily to be hospitalized and end up in intensive care, but because they need additional care or maybe additional testing. There are a lot of people, as you may have heard in the news, who have blood clots and other complications from coronavirus, that need additional type of testing, like CT scans, to rule out blood clots in the lungs, and the clinic doesn’t offer that. So there’s basically just a circuit between the clinic and the hospital that runs all the time.

GG deFiebre: [00:05:40] Okay. As a neurologist, have you had to shift your thinking? Or has anything changed in terms of how you’re approaching patients? How has that experience been?

Dr. Michael Levy: [00:05:55] Well, I still maintain a telemedicine clinic, so all my patients have access to me through webcams. It’s not as personable or as meaningful, or you can’t examine patients, but it’s still helpful just to get through the period. I would say that we only have 20 minutes to get through some of these cases.

[00:06:17] When I have encountered a patient who has a neurological issue like multiple sclerosis or back pain or something like that, I want to ask about it but I really just don’t have time and the bandwidth. There’s really a need to get through a lot of cases in this Chelsea Clinic. So, I’ve kind of put my neurology mindset on hold for now. I’m now just an internist, and then I hope to go back to my neurology life in the future.

GG deFiebre: [00:06:48] Right, right. Makes sense. Have they given you any kind of a timeframe of how long they think this might be happening?

Dr. Michael Levy: [00:06:57] They gave us a six-week timeframe. They said after six weeks, they’ll start to pull doctors from other departments like obstetrics or wherever. And, but like I said, this week I was supposed to report to duty, and so far, they said, “No need,” you know, “We’ve got it covered. There aren’t that many patients who are making appointments.”

[00:07:16] And then the walk-ins, there’s always capacity to sort of flex. And, if they call me, of course I’ll show up, but I think it’s really good news. I’ve sort of tracked the numbers in Boston, and I think the numbers tend to be trending down. We’ve seen a few previous downtrends that have then just spiked back up, so I think it depends on the time that things get reported. But, there’s no harm in being optimistic.

GG deFiebre: [00:07:42] Right, and do you think it’s due to the people taking action, in terms of doing social distancing and the other recommendations by CDC for example?

Dr. Michael Levy: [00:07:53] Yeah, I think social distancing has probably the biggest impact. I’ve seen studies, different communities depending on where you are, that somewhere between 3% and in Chelsea, 30% of people have been exposed. That means the majority still have not, and when we relax our social distancing measures and let people back to work, there’s going to be a second surge.

[00:08:16] And I think we’re a little bit more capable of dealing with it now. We know a lot more, we can predict what would happen. We still need to make sure our healthcare system isn’t overrun, because as long as it’s not, I think, again, that’s going to end up being our track, is just going through it.

[00:08:31] If we had a vaccine or a great treatment, that would change the game, obviously. Then we wouldn’t have to worry so much. But I think the vaccine is still some time away, treatment trials have not proven spectacular, and so we’re just doing the best supportive care that we can, and doing the best.

GG deFiebre: [00:08:51] Right. And then have you had to take any precautions when going home, after leaving the clinic or anything, just to obviously protect your family, or yourself too, from getting sick?

Dr. Michael Levy: [00:09:01] Yeah. So, my family is aware when I come home. I text in advance. They leave the door open for me, so I don’t touch a thing. I just go straight upstairs, take a shower, throw my clothes in the wash, and then I wipe down my car. But I’ll also say that we’re completely covered, head to toe, in the clinic, and I’ve gotten very, very close to a lot of coronavirus-infected people, and I have not yet – well, that’s the problem is, I don’t know if I’ve been infected or not.

[00:09:30] I haven’t done my own serology test. So it’s certainly possible that I had been infected and now I’m okay. And maybe I don’t know all that personal protective gear and I don’t need to take all these precautionary measures at home. But until I know, this is what I have to do.

GG deFiebre: [00:09:48] Right, right. Okay. Is there anything else important for the community to know from your experience during this?

Dr. Michael Levy: [00:09:57] I’ve been keeping my eye on the patient population who’s immune compromised, not just in neuroimmunology, but I sit on a hospital-wide committee for transplant medicine, cancer, and rheumatology. And as of yet, there doesn’t seem to be an epidemic in those patient populations.

[00:10:16] And there are a lot of treatments that are being trialed for treatment of coronavirus at the late stages, that we also use for NMO, like Eculizumab and Inebilizumab. And so, my sense at first was that immune compromised patients would be at high risk to get infected and maybe to have a more prolonged infection, but I haven’t yet seen that yet. I’m going to take polls of people, obviously later in the summer and the fall to see if that’s really true, if immune compromised people are at higher risk for coronavirus infection. But as of yet, just my own personal experience, I just haven’t seen that yet.

GG deFiebre: [00:10:52] Okay. Great, well thank you.

Does COVID-19 lead to neurological complications?

Many individuals with rare neuroimmune disorders have concerns about the coronavirus (SARS-CoV-2) that causes COVID-19 leading to new or additional neurological complications. There is still a vast amount about COVID-19 that remains unanswered. So far, the available data indicate neurologic complications are overall rare and do not seem to be common on a population-level. There does appear to be an increased number of cases of stroke in COVID-19 patients that has also been noted in the media. The information is being monitored by public health officials, clinicians and scientists. The blood clotting problem that seems to be related to COVID-19 infection in some COVID-19 patients requires further study. There have been a few case reports of varying quality that have been published about other neurological complications after a COVID-19 diagnosis. As with all viral illnesses, there may be some cases of Guillain-Barré or acute disseminated encephalomyelitis, but again, these appear to be rare and no notable increase in the frequency of these conditions with COVID-19 has been established so far. Furthermore, it does not appear that individuals with rare neuroimmune disorders, like acute disseminated encephalomyelitis, acute flaccid myelitis, MOG antibody disease, neuromyelitis optica spectrum disorder, optic neuritis, or transverse myelitis are experiencing worse outcomes than those without these conditions.

If you or someone you know does appear to be experiencing new neurologic complications in the setting of COVID-19, or is having difficulty accessing a neurologist for consultation, please let us know via email at info@wearesrna.org. For additional information regarding neurologic complications noted in COVID-19 so far, you can review the resources below. It will take more time for the data necessary to become available to properly review and research the rare neuroimmune and other neurological disorders in the context of a COVID-19 diagnosis. As of this stage, we still don’t know enough to confirm if COVID-19 may lead to a diagnosis of a neurological disorder or worsen neurological conditions.

COVID-19: Neurologists in Italy to Colleagues in US: Look for Poorly-Defined Neurologic Conditions in Patients with the Coronavirus

Neurology Podcast – SPECIAL REPORT: Dr. Avi Nath of NINDS/NIH discusses what we need to know as neurologists about the SARS-CoV2 pandemic

Neurology Podcast – SPECIAL REPORT: Dr. Ken Tyler dispels some of the misinformation about SARS-CoV2, & gives updates on antibody testing and ongoing clinical trials.

SRNA Announces Partnership with The MOG Project

We are excited to collaborate with The MOG Project to advance our joint goals to support families affected by rare neuroimmune disorders, specifically MOG antibody disease (MOGAD). The idea of the MOG Project was born in November of 2017 by Julia Lefelar and her daughter Kristina because of Julia’s diagnosis of MOGAD and the frightening lack of information about the condition.

The MOG Project was established in December of 2017 when Cynthia Albright, another individual diagnosed with MOGAD, and Amy Ednie, decided to work together to advocate for those with MOGAD. Dr. Michael Levy, Julia’s neurologist suggested that they join The Transverse Myelitis Association (TMA), now called the Siegel Rare Neuroimmune Association (SRNA). We at SRNA worked with The MOG project to launch MOGAD advocacy as part of our wider efforts to advocate for those with rare neuroimmune disorders. The MOG project has now sought registration as a 501(c)(3) non-profit organization.

SRNA looks forward to continuing and expanding our partnership with The MOG Project to make sure the education, advocacy and research resources we offer meet the needs of the MOGAD community. We also look forward to expanding and offering more specific resources and support for this community.

Sandy Siegel, the President of SRNA, remarked, “We are grateful for the partnership with The MOG Project. Our hope is that by working together we can improve the quality of life for those in our community who have MOG antibody disease.”

Amy Ednie, President of The MOG Project said, “Over the last 2 years, with the support of SRNA we have co-produced remarkable material for the MOGAD community. We are so pleased to officially become a partner and continue this relationship for the good of a global and growing group of patients and caregivers. In partnership, we can better provide hope for a growing community navigating a new frontier in neuroimmune disorders.”

Julia Lefelar, Executive Director of The MOG Project added, “We have been blessed to be able to work with SRNA and through our common efforts have made significant progress in providing the best information to the MOGAD community. We are thankful for our strong and lasting relationship and are thrilled to continue working with such a caring organization, which can certainly only make our work together better.”

About the Siegel Rare Neuroimmune Association

SRNA was founded 25 years ago by families of loved ones affected by rare neuroimmune disorders. We advocate for, support and educate individuals and their families diagnosed with a spectrum of related rare neuroimmune disorders – acute disseminated encephalomyelitis, acute flaccid myelitis, MOG antibody disease, neuromyelitis optica spectrum disorder, optic neuritis and transverse myelitis. We invest in scientific research, therapy development and training of clinician-scientists dedicated to these disorders. We have over 14,000 members and are active in 111 countries. We offer an up-to-date accurate website, resource library of over 300 publications, a patient registry, “Ask the Expert” podcasts, education symposia, the Myelitis Helpline, Quality of Life Family camps, clinician-scientist training Fellowship and a support group network. SRNA is a registered nonprofit organization recognized by the U.S. Internal Revenue Service as a 501(c)(3) non-profit organization with a Guidestar Gold Seal of Transparency.

About The MOG Project

The MOG Project was founded 2 years ago because of the lack of accurate and up-to-date information and the inability to connect with others trying to find answers to what can be expected with a diagnosis of MOGAD. The MOG Project was established to connect people in the hopes that no one will ever go without the latest information pertaining to their diagnosis. The MOG Project is devoted to raising awareness, educating doctors, patients and caregivers, advancing research through expert collaboration and fundraising, and providing support and advocacy for our community in hopes of finding a cure.

COVID-19 and Rare Neuroimmune Disorders

Updated on March 17th, 2020.

Click here for SRNA’s coronavirus page, which will be updated with all the latest developments.

The information and resources provided here have been developed with members of SRNA’s Medical and Scientific Council. The information and resources provided are meant to be an educational resource and do not constitute medical advice. For specific information about treatments, symptoms you may be experiencing or questions about personal exposure as someone with a rare neuroimmune disorder or as a caregiver, please contact your physician directly.

As the spread of COVID-19 continues across the world, it’s important our community knows and understands the risks associated with this virus in the setting of a rare neuroimmune disorder. Risk factors associated with COVID-19 may vary significantly for each individual diagnosed with a rare neuroimmune disorder. Although many who live with these diagnoses are healthy individuals, there are many with compromised or suppressed immune systems, respiratory concerns, and other factors that make their susceptibility to illness more significant. Each individual and family should know their risks and take appropriate precautions relative to their diagnosis and, if in doubt, consult your treating physician.

Since the situation is rapidly changing, it is essential to check the frequent updates posted on the Centers for Disease Control and Prevention website and the website of your state’s Department of Health. A list of resources is available below.

Symptoms of COVID-19

The most common symptoms are cough, fever, and shortness of breath, starting 2 – 14 days after an exposure (the average is 4 days). Some patients with COVID-19 do not have a fever at the beginning of the illness. It is important to report these symptoms to your local physicians (e.g., your primary care doctor), although these are common symptoms that occur with many types of infections, including other viruses like influenza and some bacterial infections.

General Recommendations from SRNA’s Medical and Scientific Council

Please note these are general recommendations and are not medical advice. The information is provided for general information purposes and should not be relied on as a substitute for professional medical advice, care, treatment or for diagnosis. Do not change your medication or regime without talking to your doctor first.

Recommendations for those with rare neuroimmune disorders do not differ much from guidelines given to the general population, although many individuals in our community may be considered high risk. Anybody with respiratory deficits or weakness in the chest or diaphragm, which can occur after damage to the spinal cord, will be at high risk of complications because of the difficulties generated by the pneumonia, hypoventilation or respiratory distress. Dr. Benjamin Greenberg of the University of Texas Southwestern noted, “It is important for all patients on immunosuppressive regimens to take precautions against being exposed to the circulating Coronavirus. Frequent hand washing, reduced public exposure, and social distancing are all recommended. Stay up to date with NORD and CDC recommendations and discuss specific concerns with your health care providers. If you develop fevers or respiratory symptoms, seek care as dictated by your local providers.”

Long-term treatments for Neuroimmune Disorders and COVID-19

Although there is no evidence or data about how COVID-19 may affect patients on long-term treatments for multiple sclerosis (MS), NMOSD, or MOGAD, at the present our view is that people with these conditions would not normally need to stop taking a disease-modifying treatment as a result of the threat of the virus. For patients taking medications for MS such as Glatiramer Acetate (Copaxone® and Glatopa®) and beta interferons (Avonex, Plegridy, Rebif or Betaseron), which are not immunosuppressive medications, the risk is theoretically low.

If you are on immunosuppressive medications such as Mycophenolate (Cellcept®), azathioprine (Imuran®), methotrexate or other steroid-sparing medications, please make sure you update the safety laboratory testing (e.g., Complete blood cell count and differential, liver function test and immunoglobulins).

For patients on Tysabri, or B-cell therapies such as Rituximab or Ocrelizumab (Ocrevus®), a similar update of safety blood tests is recommended.

Glatiramer acetate (brand name: Copaxone), teriflunomide (brand name: Aubagio), dimethyl fumarate (brand name: Tecfidera) and beta-interferons (various brand names) are generally likely to be safer than the other DMTs as they are not considered to be generalized immunosuppressive therapies. We likewise recommend that people with MS who are taking natalizumab (Tysabri) continue as normal, noting that we will be closely monitoring the developing situation.

Recommendations from CDC for High Risk Individuals

CDC recommends that patients with high risk, which includes patients with neuroinflammatory diseases:

  • Stock up on supplies including medications. Let your provider know if you need refills.
  • Avoid close contact with people who are sick.
  • Take every day preventative actions: clean hands often and avoid touching your face, nose, eyes, etc.
  • When you go out in public, keep away from others who are sick, limit close contact and wash your hands often.
  • Avoid crowds, especially in poorly ventilated spaces. This would include airplane travel and public transportation. Your risk of exposure to respiratory viruses like COVID-19 may increase in crowded, closed-in settings with little air circulation if there are people in the crowd who are sick.

Resources

Please take the time to familiarize yourself with the resources below. Bookmark these links and refer back to them as the situation is continuously developing and quickly changing. Be proactive and cautious, act with knowledge and not out of fear.

Centers for Disease Control and Prevention (CDC)

National Institutes of Health (NIH)

World Health Organization (WHO)

National Organization for Rare Disorders (NORD)

Shepherd Center

Massachusetts General Hospital Department of Neurology  COVID 19 (Coronavirus) Patient Information Bulletin

Center for Disability Rights: Action Steps for Attendant Service Users in Response to Coronavirus Disease 2019 (COVID-19)