Join us this #Carentine’s Day

February 14th is around the corner, and we know that most people think of this day as a celebration of love. 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. That’s why this February 14th, we are asking you to help us celebrate Carentine’s Day, a day in which you can show your support for the SRNA community and our mission.

You can help us in the following ways:

  1. Donate to SRNA’s #carentine Facebook Fundraiser
  2. Create your own #carentine Fundraiser on Facebook
  3. or, donate directly through our website, where you will be able to send a #carentine e-card and send your love to someone special!

We appreciate any help you can give us, whether you donate $5 or $500. Every bit helps. These funds are used to support our programs, such as our support group meetings, our Ask the Expert podcasts, the Rare Neuroimmune Disorders Symposium (RNDS), and the SRNA Quality of Life Family Camp.

Will you be our carentine?

End of Year Reflections

2020 was difficult. But despite the challenges the world faced in 2020, we at SRNA are proud of the accomplishments our community achieved this year. In these uncharted times, we broke new barriers to further our mission. Let’s take a look back at our top 20 accomplishments of 2020 as we prepare to enter the next chapter.

In 2020, we:

  1. Welcomed 571 new members into the SRNA community
  2. Held our first Rare Disease Month campaign
  3. Attended our first Reeve Summit to learn and connect with others in the spinal cord injury community, and to spread our mission
  4. Published two issues of the SRNA Magazine
  5. Held our first virtual Quality of Life Family Camp
  6. Funded five research publications
  7. Launched a brand-new podcast series, ABCs of NMOSD, in collaboration with the Connor B. Judge Foundation, The Guthy Jackson Charitable Foundation, and The Sumaira Foundation for NMO, which was made possible through a patient education grant from Viela Bio
  8. Created a COVID-19 information page to keep our community informed
  9. Co-hosted the first virtual Rare Neuroimmune Disorders Symposium, along with our partners at University of Utah Health
  10. Added 13 medical professionals to our Medical Professional Network
  11. Hosted 9 episodes of our Ask the Expert Podcast Series
  12. Launched our new Peer Connect program
  13. Held our first virtual Walk Run ‘n Roll, with the support of our Wisconsin support group leader, Maleah Moskoff
  14. Awarded the 2019 Distinguished Service Award to several of our volunteers, who help make our work possible and further SRNA’s mission
  15. Held our first AFM Awareness Month in July
  16. Introduced 10 new Hope Ambassadors
  17. Held our first virtual support group meetings
  18. Sponsored the AFM Virtual Symposium, which was organized by the AFM Working Group, Johns Hopkins Medicine, and Kennedy Krieger Institute
  19. Made transcriptions available for all new symposium videos, podcasts, and other audio resources in our Resource Library
  20. Launched a research survey to gather information on how the COVID-19 pandemic is affecting our community

Thank you for being a part of yet another hopeful year!

We’re also reaching the end of our 2020 year-end fundraising campaign, and we’re running short of our target. If you’re able, please help us meet our goal today — at whatever level feels right to you. You can make a tax-deductible gift on our website or send a check to SRNA at PO Box 826962, Philadelphia PA 19182-6962.

Every single gift will help us continue to serve as a trusted resource and support system for all those with rare neuroimmune disorders.

Wishing you and your loved ones a healthy, joyful, and restorative new year ahead.

With love and gratitude,

— SRNA

Thank you to our educational sponsors

All educational content and programs are solely developed by the SRNA staff, members of the scientific board and approved by Board of Directors.

Thank you to our partners

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 [email protected].

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.