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A link between COVID-19 and autoimmune encephalitis?

A link between COVID-19 and autoimmune encephalitis?


August 23, 2023 | by Kara McGaughey, PennNeuroKnow and IAES Collaboration

A message from IAES Blog Staff:

The staff at IAES is proud to present to all of you another wonderful article/blog from the amazing team at PennNeuroKnow. Since 2019 IAES has been extremely lucky to be in partnership with the PennNeuroKnow(PNK) team to help us all better understand complex medical issues related to AE and neurology in general. The talented PNK team continues to keep us up-to-date and help clarify the complexities we face each day along our AE journey, and we are eternally grateful! You can find out much more about this stellar group at: https://pennneuroknow.com/

——-

Introduction

The Covid 19 pandemic spread its insidious tentacles all over the world. Scientific papers, chapters of books and entire university courses can be counted on to outline and delve deep into the wide spread effects on all levels of society that Covid has caused. For the AE community we are not only affected by the general Covid effects but possibly, also, in relation to our own ongoing AE journeys. How does the Covid virus affect AE? Is there a link between Covid 19 and AE? Kara McGaughey from the PNK team has done a wonderful job helping us all better understand what can be understood about this possible relationship at this time and what it may mean for the future of AE research.

Coronavirus Disease (COVID-19) is an ongoing global health crisis with more than 760 million confirmed cases and nearly 7 million deaths reported by the World Health Organization as of June 2023.1 However, as we enter into the fourth year of the pandemic, we’re beginning to understand that knowing the number of active cases of COVID-19 isn’t the whole story.

In this post, we will dive into the long-term consequences of COVID-19, with a focus on the potential link between COVID-19 and autoimmune encephalitis (AE). We will explore why scientists think these diseases might be connected as well as what implications these new, post-COVID cases can have for AE research.

What is the connection between COVID-19 and AE?

Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) is a newly-emerged virus that causes Coronavirus Disease 2019 (COVID-19). SARS-CoV-2 infection results in various systemic and respiratory symptoms such as fever, fatigue, cough, and difficulty breathing. In cases of severe disease, these symptoms can cause heart and lung failure, requiring hospitalization. However, the struggle isn’t always over once infection has subsided. Around 15% of patients have persistent symptoms for months after testing positive.2-3 These symptoms, often including fatigue and brain fog, can be debilitating. In many cases, a patient’s ability to carry out normal, everyday activities is profoundly affected. In a much, much smaller percentage of cases, the SARS-CoV-2 virus can also function as a trigger for some autoimmune diseases, like Guillain-Barré Syndrome (GBS), rheumatoid arthritis, and even autoimmune encephalitis (AE).4-5

AE refers to a group of conditions that occur when the body’s immune system mistakenly attacks healthy brain tissue.5 The cause of AE is often unknown. However, experts say that, in some cases, exposure to certain bacteria or viruses may increase someone’s risk of AE. For example, infection with herpes simplex virus 1 (HSV-1) has been linked to later development of AE, particularly the anti-NMDA AE subtype.7

We are seeing something similar happening now with SARS-CoV-2 viral infections (and re-infections) leading to an uptick in the number of AE diagnoses. Case reports of this so-called “post-COVID AE” have come from all over the world — Iran, Canada, France, Italy, the United Kingdom, China, Sweden, India, Mexico, and the United States — and describe patients across a wide range of ages from 2 to 88.4,8-9  A majority of these post-COVID AE diagnoses are for either limbic or anti-NMDA AE subtypes with patients experiencing headache, cognitive impairment, and seizures.4 Fortunately, a majority of patients respond well to treatment.4

How can SARS-CoV-2 infection lead to AE?

How exactly AE develops from SARS-CoV-2 infections is not yet fully understood. However, scientists do have some theories.

The “cytokine storm” and inflammatory cytokines:

Cytokines are small proteins that are crucial for controlling the immune system’s activity.10 Inflammatory cytokinesact as signals that tell the immune system to turn on, enabling the body to recognize and destroy foreign invaders (like the SARS-CoV-2 virus). Anti-inflammatory cytokines are responsible for dialing immune system activity back down once the threat has been neutralized. During the pandemic, you may have heard about COVID-19 causing the overproduction of inflammatory cytokines, known as a “cytokine storm.” With too many of these cytokines released in the body, immune system activity and inflammation can spiral out of control, leading to, in the worst cases, multi-organ failure.4-6,11

Scientists think that one link between COVID-19 and AE is a particular inflammatory cytokine, IL-6, released during this storm.5,12 Elevated levels of IL-6 are often found in patients with anti-NMDA AE.11,13-14 In fact, they are considered a characteristic feature of this AE subtype.13 Given that many post-COVID AE cases are anti-NMDA, it is possible that high levels of IL-6 as a result of SARS-CoV-2 viral infection could be one reason for the increased risk of developing AE after COVID-19.

Accidental autoimmunity:

While we want an immune system that can recognize and react to foreign invaders (e.g., SARS-CoV-2, tumor cells, etc.), it is just as important that our own cells don’t get caught up in the crossfire. Fortunately, our immune system has evolved to both quickly and accurately distinguish outsiders from the body itself. However, sometimes in the face of viral infections that cause extreme inflammation, this protective, self-recognition feature goes awry and the body begins to produce antibodies that accidentally target its own tissue (“autoantibodies”). This autoantibody-induced self destruction is called autoimmunity.4 It is possible that SARS-CoV-2 viral infections induce AE through an autoimmune process that generates antibodies targeting brain cells.

What implications might this have for AE research?

AE is notoriously rare and frequently misdiagnosed.15 Evidence for a link between SARS-CoV-2 infections and the development of AE means more of the scientific spotlight is being given to AE. This increased awareness could make physicians more likely to explore AE as a possible diagnosis, decreasing the time patients spend in limbo waiting for answers and treatment. Perhaps more importantly, in scientific research, money and resources flow where attention goes. This could mean more funding for AE research and more AE clinical trials. Hopefully, this will lead to a better understanding not only of the relationship between COVID-19 and AE, but AE and autoimmunity more broadly.

A final note: It’s important to remember that getting infected or re-infected with COVID-19 doesn’t mean you will end up with AE. While there have been a fair number of case reports of post-COVID AE, it is still a rare outcome. Moreover, it is very difficult to establish any sort of causal link between SARS-CoV-2 infection and the later development of a disease. In most cases it is impossible to know whether some of these patients would have developed AE even without exposure to COVID-19. Nonetheless, the best path forward is to be aware of ongoing research and continue preventive measures, like wearing a mask in high-risk situations and making sure you stay up to date on COVID-19 vaccinations.

Work cited:

  1. WHO Coronavirus (COVID-19) Dashboard. (n.d.). Retrieved May 1, 2023, from https://covid19.who.int
  2. Nearly One in Five American Adults Who Have Had COVID-19 Still Have “Long COVID.” (2022, June 22).https://www.cdc.gov/nchs/pressroom/nchs_press_releases/2022/20220622.htm
  3. Lledó, G. M., Sellares, J., Brotons, C., Sans, M., Antón, J. D., Blanco, J., Bassat, Q., Sarukhan, A., Miró, J. M., & de Sanjosé, S. (2022). Post-acute COVID-19 syndrome: A new tsunami requiring a universal case definition. Clinical Microbiology and Infection, 28(3), 315–318. https://doi.org/10.1016/j.cmi.2021.11.015
  4. Stoian, A., Stoian, M., Bajko, Z., Maier, S., Andone, S., Cioflinc, R. A., Motataianu, A., Barcutean, L., & Balasa, R. (2022). Autoimmune Encephalitis in COVID-19 Infection: Our Experience and Systematic Review of the Literature. Biomedicines, 10(4), 774. https://doi.org/10.3390/biomedicines10040774
  5. Nabizadeh, F., Balabandian, M., Sodeifian, F., Rezaei, N., Rostami, M. R., & Naser Moghadasi, A. (2022). Autoimmune encephalitis associated with COVID-19: A systematic review. Multiple Sclerosis and Related Disorders, 62, 103795.https://doi.org/10.1016/j.msard.2022.103795
  6. Payus, A. O., Jeffree, M. S., Ohn, M. H., Tan, H. J., Ibrahim, A., Chia, Y. K., & Raymond, A. A. (2022). Immune-mediated neurological syndrome in SARS-CoV-2 infection: A review of literature on autoimmune encephalitis in COVID-19. Neurological Sciences, 43(3), 1533–1547. https://doi.org/10.1007/s10072-021-05785-z
  7. Armangue, T., Spatola, M., Vlagea, A., Mattozzi, S., Cárceles-Cordon, M., Martinez-Heras, E., Llufriu, S., Muchart, J., Erro, M. E., Abraira, L., Moris, G., Monros-Giménez, L., Corral-Corral, Í., Montejo, C., Toledo, M., Bataller, L., Secondi, G., Ariño, H., Martínez-Hernández, E., … Zabalza, A. (2018). Frequency, symptoms, risk factors, and outcomes of autoimmune encephalitis after herpes simplex encephalitis: A prospective observational study and retrospective analysis. The Lancet Neurology, 17(9), 760–772. https://doi.org/10.1016/S1474-4422(18)30244-8
  8. Saffari, P., Aliakbar, R., Haritounian, A., Mughnetsyan, R., Do, C., Jacobs, J., Hoffer, J., Arieli, R., Liu, A. K., Saffari, P., Aliakbar, R., Haritounian, A., Mughnetsyan, R., Do, C., Jacobs, J., Hoffer, J., Arieli, R., & Liu, A. K. (2023). A Sharp Rise in Autoimmune Encephalitis in the COVID-19 Era: A Case Series. Cureus, 15(2). https://doi.org/10.7759/cureus.34658
  9. Mekheal, E., Mekheal, M., Roman, S., Mikhael, D., Mekheal, N., Manickam, R., Mekheal, E., Mekheal, M., Roman, S., Mikhael, D., Mekheal, N., & Manickam, R. (2022). A Case Report of Autoimmune Encephalitis: Could Post-COVID-19 Autoimmunity Become a Lethal Health Issue? Cureus, 14(6). https://doi.org/10.7759/cureus.25910
  10. Kim, E. Y., & Moudgil, K. D. (2008). Regulation of autoimmune inflammation by pro-inflammatory cytokines. Immunology Letters, 120(1), 1–5. https://doi.org/10.1016/j.imlet.2008.07.008
  11. Byun, J.-I., Lee, S.-T., Moon, J., Jung, K.-H., Sunwoo, J.-S., Lim, J.-A., Kim, T.-J., Shin, Y.-W., Lee, K.-J., Jun, J.-S., Lee, H. S., Lee, W.-J., Kim, Y.-S., Kim, S., Jeon, D., Park, K.-I., Jung, K.-Y., Kim, M., Chu, K., & Lee, S. K. (2016). Distinct intrathecal interleukin-17/interleukin-6 activation in anti-N-methyl-d-aspartate receptor encephalitis. Journal of Neuroimmunology, 297, 141–147. https://doi.org/10.1016/j.jneuroim.2016.05.023
  12. Liu, J., Li, S., Liu, J., Liang, B., Wang, X., Wang, H., Li, W., Tong, Q., Yi, J., Zhao, L., Xiong, L., Guo, C., Tian, J., Luo, J., Yao, J., Pang, R., Shen, H., Peng, C., Liu, T., … Zheng, X. (2020). Longitudinal characteristics of lymphocyte responses and cytokine profiles in the peripheral blood of SARS-CoV-2 infected patients. EBioMedicine, 55, 102763.https://doi.org/10.1016/j.ebiom.2020.102763
  13. Liu, J., Liu, L., Kang, W., Peng, G., Yu, D., Ma, Q., Li, Y., Zhao, Y., Li, L., Dai, F., & Wang, J. (2020). Cytokines/Chemokines: Potential Biomarkers for Non-paraneoplastic Anti-N-Methyl-D-Aspartate Receptor Encephalitis. Frontiers in Neurology, 11.https://www.frontiersin.org/articles/10.3389/fneur.2020.582296
  14. Byun, J.-I., Lee, S.-T., Moon, J., Jung, K.-H., Sunwoo, J.-S., Lim, J.-A., Kim, T.-J., Shin, Y.-W., Lee, K.-J., Jun, J.-S., Lee, H. S., Lee, W.-J., Kim, Y.-S., Kim, S., Jeon, D., Park, K.-I., Jung, K.-Y., Kim, M., Chu, K., & Lee, S. K. (2016). Distinct intrathecal interleukin-17/interleukin-6 activation in anti-N-methyl-d-aspartate receptor encephalitis. Journal of Neuroimmunology, 297, 141–147. https://doi.org/10.1016/j.jneuroim.2016.05.023
  15. Lancaster, E. (2016). The Diagnosis and Treatment of Autoimmune Encephalitis. Journal of Clinical Neurology (Seoul, Korea), 12(1), 1–13. https://doi.org/10.3988/jcn.2016.12.1.1

 

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On June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

 

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Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org  

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.   Trivia Playing cards 3 FB 500x419 - A link between COVID-19 and autoimmune encephalitis? For this interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.   AE Warrior Store 300x200 - A link between COVID-19 and autoimmune encephalitis?

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Halloween Ideas

Halloween Ideas

October 13, 2021 |  By Tabitha Andrews Orth and Mari Wagner Davis

Every parent or caring adult knows all kids have gone through enough during the past few years.  They deserve to have a fun and memorable Halloween celebration, keeping in mind the Covid-19 rules and mandates still in place in many states and countries.

Trick-or-treating was certainly different last year and may be this year as well. Whether the area you live has scheduled full door to door trick or treating or modified events, you can make sure every child gets to experience the candy, the costumes, and the fun of this truly kid-friendly event. Here are some tricks you can use to make this Halloween a treat for most families. This is an opportunity whether out of need to simply to create a new and fun Halloween tradition for many of us to get creative and enjoy this wonderful time-honored day!

 

AT-HOME EVENTS (for Small Kids and Immunocompromised Attendees)

Stage a Trick-or-Treat in Your Home: Set out buckets of candy in different rooms, decorate each door in a special way, and play Halloween music. Instead of going door-to-door in the neighborhood, kids go door-to-door in your house. Add to the fun by carving or decorating pumpkins with members of your household and displaying them.

Do a Twilight Hunt: Adhere glow-in-the-dark stickers to goody bags and hide them all over the backyard. At dusk, give each child a small flashlight and send them searching for treasure. Carving or decorating pumpkins outside, at a safe distance, with friends or neighbors, is an added bonus.

Host a Mask Costume Contest on Zoom: Pictures can be submitted to an appointed judge. Then, friends submit to design the judge the designs of personal or a family’s set of face masks. Gather together over Zoom to see who has come up with the award-winning single mask and set of masks.

Create a Backyard A-Maze: Set up a family obstacle course with booby traps and haunts. Ask the kids to collect balls to win a prize. A few options here would be:

  • Spray them with Silly String as they grab candy.
  • Get them to venture behind caution tape where another family member can jump out from a hiding spot.
  • Setting up a series of weblike structures that make the kids crawl under the webs to reach goodies.

Stage a Halloween-Themed Meal: Organize a Halloween-themed meal at home with your family members. Get creative with your meal choices, thinking up fun ways to present traditional meal items geared toward this holiday. Need help? Check out the Weelicious blog for some fun ideas! 

GROUP EVENTS

The Halloween-themed meal described above can also be staged for larger groups, too, in an outdoor location when eating and socializing with larger groups. In fact, there’s an opportunity to maximize the fun for adults if there’s competition involved in either the set-up or the food – or both!

Organize a Schoolwide or Other Parking Lot Trick-or-Treat: If the weather will cooperate, it’s easy enough to stage this in a large, local parking lot. Decorate the cars or trunks before gathering to give and receive candy. With everyone wearing a face mask, park in alternate spots, and place cones six feet from each car’s trunk. Include a rope at the end of each cone that’s clipped with candy for trick-or-treaters. By planning this in advance, you may be able to ask businesses inclined to participate (especially those are geared toward children) to donate candy, coupons or other treats to the event. If the space allows this, add an outdoor Halloween movie with people/families spaced six feet apart.

Do a Window Treasure Hunt: Pick a Halloween symbol – something simple like a witch’s hat – and then let the kids cruise the neighborhood to try to find as many as they can. This works best by coordinating in advance with neighbors, encouraging them to dress appropriately and creating a station outside of each participating home with glow tape to mark social distancing. Toss treat bags or stock a station made up as a caldron or witch’s table with treats, so each child can come up to it to get a treat left by the retreating witch. Lights and music can enhance this event dramatically! Other fun ideas for this are in this video, including how to make glow-in-the-dark chalk to create social distancing, games, a maze that gives clues to the next treat stations, etc. Let your imagination guide you. 

Host a Zoom Costume Party or a Photo Shoot: Have a Zoom costume party to demonstrate your creativity. For safe social distancing, dress the kids up, set up a backdrop outside and let each of them ham it up for their own mini photo shoot. Give treats and prizes to all participants and a memorable photo to make the occasion.

Reversed Trick-or-Treating: Organize a “You’ve Been Booed” event with your friends and neighbors. Get the word out by text, e-mail or phone to explain the game, asking people to sign up for a “Secret Boo.” Every participant’s name is put in a bag and each person is assigned who they will “Boo” by a drawing. Ring the doorbell of the person’s name you receive, leaving a bag of goodies out front, and running away before the door is opened. Tape a big sign to the bag that says, “You’ve Been Booed!” along with the recipient’s name and signed by the giver so they know whom to thank.

Host an Online Jack-o-lantern Event: Make sure entries are put in age categories – painting for the kids and carving for adults – so pumpkin art is judged among peer groups. Pictures can be submitted to an appointed judge. Have treats and prizes for all participants. In the event this is done in a neighborhood, light your jack-o-lanterns at a marked social distance when it’s dark enough to see each work of art. Judging and treat- and prize-giving can be done at a social distance.

Organize a Halloween Car Parade: Car parades can be a lot of fun. Music and lights can add to your Halloween caravan. Create a “drive-by event” or contest where individuals dress up or decorate their vehicles and drive by multiple judges’ homes, with a Zoom event after for awarding prizes.

“Drive-through events” are where individuals remain in their vehicles in an area with Halloween displays. Participants can receive a treat bag of commercially packaged non-perishable treats. Contact local places of worship, schools and locations that have large parking lots to see if you can arrange an event at a central location.

Door Decorating Competition: Get neighbors, friends and family living nearby to sign up for a door decorating competition. Then walk or drive by each house to view the spooky scenes. Arrange for treat-giving at each location by texting or calling the house to announce your arrival. Treats can be placed on the hood of your car (hopefully by someone in costume) so the kids can get out and retrieve their treats while social distancing. Again, appoint a judge in advance and host a Zoom after to award prizes for the best door.

Halloween Window Letter Hunt for Kids: This is a great activity that still involves the neighborhood! Contact your neighbors via text, phone or a neighborhood Facebook group. Pick a secret word relating to Halloween, e.g. Ghost, Witch, Goblin, Frankenstein or Vampire. Each home participating is assigned a letter in the secret word. They then create the letter they are assigned with Halloween art. Here is a link to inspire you.  A list of participating addresses is posted in front of each participating house so passersby can join in the fun and everyone has the correct addresses. Walk or drive to each house on your list and look for the letter that will be posted by a specific date and time to signify the beginning of the hunt. Make a note of each letter you find at each house. At the end of the hunt, unscramble the letters to solve the word scramble puzzle and discover what the secret word is. Text the organizer the secret word so they know you have solved the trick. Celebrate solving the puzzle trick by having a Halloween-themed meal at home, a special dessert, Halloween family movie time or a candy hunt in your yard or home.

Visit a Pumpkin Patch or Orchard: Be sure in advance that attendees use hand sanitizer before touching pumpkins or picking apples, and that wearing masks in enforced as is social distancing.

A Few Key Notes to Remember

  • If you are preparing goodie bags, wash your hands with soap and water for at least 20 seconds before and after prepping the bags.
  • A costume mask (such as for Halloween) is not a substitute for a cloth mask. A costume mask shouldn’t be used unless it’s made of two or more layers of breathable fabric that covers the mouth and nose, leaving no gaps around the face and mouth, leaving no gaps around the face.
  • Don’t wear a costume mask over a protective cloth mask because it can be dangerous if the costume mask interferes with normal breathing. Consider getting creative by using a Halloween-themed cloth mask.
  • If screaming will occur, greater social distancing is advised. The greater the distance, the lower the risk of spreading a respiratory virus.
  • If you attend any event, ensure appropriate mask use is required and enforced, and that all groups remain more than six feet apart.

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Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

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For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - Halloween Ideas 

Be a part of the solution by supporting IAES with a donation today.

 

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Fun Halloween Activities in a Social-Distancing Year

Fun Halloween Activities in a Social-Distancing Year

October 6, 2020 |  By Tabitha Andrews Orth and Mari Wagner Davis

Every parent or caring adult knows all kids have gone through enough this year that they deserve to have a fun and memorable Halloween celebration, keeping in mind the Covid-19 rules of necessary social distancing.

Trick-or-treating will certainly look and feel different this year (the masks alone will change costumes – maybe with a little creativity for the better!), and you can make sure every child gets to experience the candy, the costumes, and the fun of this truly kid-friendly event. Here are some tricks you can use to make this Halloween a treat for most families.

AT-HOME EVENTS (for Small Kids and Immunocompromised Attendees)

Stage a Trick-or-Treat in Your Home: Set out buckets of candy in different rooms, decorate each door in a special way, and play Halloween music. Instead of going door-to-door in the neighborhood, kids go door-to-door in your house. Add to the fun by carving or decorating pumpkins with members of your household and displaying them.

Do a Twilight Hunt: Adhere glow-in-the-dark stickers to goody bags and hide them all over the backyard. At dusk, give each child asmall flashlight and send them searching for treasure. Carving or decorating pumpkins outside, at a safe distance, with friends or neighbors, is an added bonus.

Host a Mask Costume Contest on Zoom: Pictures can be submitted to an appointed judge. Then, friends submit to design the judge the designs of personal or a family’s set of face masks. Gather together over Zoom to see who has come up with the award-winning single mask and set of masks.

Create a Backyard A-Maze: Set up a family obstacle course with booby traps and haunts. Ask the kids to collect balls to win a prize. A few options here would be:

  • Spray them with Silly String as they grab candy.
  • Get them to venture behind caution tape where another family member can jump out from a hiding spot.
  • Setting up a series of weblike structures that make the kids crawl under the webs to reach goodies.

Stage a Halloween-Themed Meal: Organize a Halloween-themed meal at home with your family members. Get creative with your meal choices, thinking up fun ways to present traditional meal items geared toward this holiday. Need help? Check out the Weelicious blog for some fun ideas! 

GROUP EVENTS

The Halloween-themed meal described above can also be staged for larger groups, too, in an outdoor location when eating and socializing with larger groups. In fact, there’s an opportunity to maximize the fun for adults if there’s competition involved in either the set-up or the food – or both!

Organize a Schoolwide or Other Parking Lot Trick-or-Treat: If the weather will cooperate, it’s easy enough to stage this in a large, local parking lot. Decorate the cars or trunks before gathering to give and receive candy. With everyone wearing a face mask, park in alternate spots, and place cones six feet from each car’s trunk. Include a rope at the end of each cone that’s clipped with candy for trick-or-treaters. By planning this in advance, you may be able to ask businesses inclined to participate (especially those are geared toward children) to donate candy, coupons or other treats to the event. If the space allows this, add an outdoor Halloween movie with people/families spaced six feet apart.

Do a Window Treasure Hunt: Pick a Halloween symbol – something simple like a witch’s hat – and then let the kids cruise the neighborhood to try to find as many as they can. This works best by coordinating in advance with neighbors, encouraging them to dress appropriately and creating a station outside of each partipating home with glow tape to mark social distancing. Toss treat bags or stock a station made up as a caldron or witch’s table with treats, so each child can come up to it to get a treat left by the retreating witch. Lights and music can enhance this event dramatically! Other fun ideas for this are in this video, including how to make glowin-the-dark chalk to create social distancing, games, a maze that gives clues to the next treat stations, etc. Let your imagination guide you. 

Host a Zoom Costume Party or a Photo Shoot: Have a Zoom costume party to demonstrate your creativity. For safe social distancing, dress the kids up, set up a backdrop outside and let each of them ham it up for their own mini photo shoot. Give treats and prizes to all participants and a memorable photo to make the occasion.

Reversed Trick-or-Treating: Organize a “You’ve Been Booed” event with your friends and neighbors. Get the word out by text, e-mail or phone to explain the game, asking people to sign up for a “Secret Boo.” Every participant’s name is put in a bag and each person is assigned who they will “Boo” by a drawing. Ring the doorbell of the person’s name you receive, leaving a bag of goodies out front, and running away before the door is opened. Tape a big sign to the bag that says, “You’ve Been Booed!” along with the recipient’s name and signed by the giver so they know whom to thank.

Host an Online Jack-o-lantern Event: Make sure entries are put in age categories – painting for the kids and carving for adults – so pumpkin art is judged among peer groups. Pictures can be submitted to an appointed judge. Have treats and prizes for all participants. In the event this is done in a neighborhood, light your jack-o-lanterns at a marked social distance when it’s dark enough to see each work of art. Judging and treat- and prize-giving can be done at a social distance.

Organize a Halloween Car Parade: Car parades can be a lot of fun. Music and lights can add to your Halloween caravan. Create a “drive-by event” or contest where individuals dress up or decorate their vehicles and drive by multiple judges’ homes, with a Zoom event after for awarding prizes.

“Drive-through events” are where individuals remain in their vehicles in an area with Halloween displays. Participants can receive a treat bag of commercially packaged non-perishable treats. Contact local places of worship, schools and locations that have large parking lots to see if you can arrange an event at a central location.

Door Decorating Competition: Get neighbors, friends and family living nearby to sign up for a door decorating competition. Then walk or drive by each house to view the spooky scenes. Arrange for treat-giving at each location by texting or calling the house to announce your arrival. Treats can be placed on the hood of your car (hopefully by someone in costume) so the kids can get out and retrieve their treats while social distancing. Again, appoint a judge in advance and host a Zoom after to award prizes for the best door.

Halloween Window Letter Hunt for Kids: This is a great activity that still involves the neighborhood! Contact your neighbors via text, phone or a neighborhood Facebook group. Pick a secret word relating to Halloween, e.g. Ghost, Witch, Goblin, Frankenstein or Vampire. Each home participating is assigned a letter in the secret word. They then create the letter they are assigned with Halloween art. Here is a link to inspire you.  A list of participating addresses is posted in front of each participating house so passersby can join in the fun and everyone has the correct addresses. Walk or drive to each house on your list and look for the letter that will be posted by a specific date and time to signify the beginning of the hunt. Make a note of each letter you find at each house. At the end of the hunt, unscramble the letters to solve the word scramble puzzle and discover what the secret word is. Text the organizer the secret word so they know you have solved the trick. Celebrate solving the puzzle trick by having a Halloween-themed meal at home, a special dessert, Halloween family movie time or a candy hunt in your yard or home.

Visit a Pumpkin Patch or Orchard: Be sure in advance that attendees use hand sanitizer before touching pumpkins or picking apples, and that wearing masks in enforced as is social distancing.

A Few Key Notes to Remember

  • If you are preparing goodie bags, wash your hands with soap and water for at least 20 seconds before and after prepping the bags.
  • A costume mask (such as for Halloween) is not a substitute for a cloth mask. A costume mask shouldn’t be used unless it’s made of two or more layers of breathable fabric that covers the mouth and nose, leaving no gaps around the face and mouth, leaving no gaps around the face.
  • Don’t wear a costume mask over a protective cloth mask because it can be dangerous if the costume mask interferes with normal breathing. Consider getting creative by using a Halloween-themed cloth mask.
  • If screaming will occur, greater social distancing is advised. The greater the distance, the lower the risk of spreading a respiratory virus.
  • If you attend any event, ensure appropriate mask use is required and enforced, and that all groups remain more than six feet apart.

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Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

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For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

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Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.


International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

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