A Look Back at Autoimmune Encephalitis Awareness Month

A Look Back at Autoimmune Encephalitis Awareness Month

April-1-2020 | Barbara Layt Vujaklija, RN

Now that frantic February is finally over its time to look back and take stock of what we achieved. World Encephalitis Day (WED) was started by the Encephalitis Society in October of 2013 and has been held every February 22nd annually since then. The purpose is to raise awareness of encephalitis globally. The International Autoimmune Encephalitis Society (IAES) has participated in WED annually since its formation.  This year IAES designated the month of February to be Autoimmune Encephalitis (AE) Awareness month and will continue to exhibit the face of AE every year.

 

So, what did we do to bring attention to AE in February 2020?  IAES President, Tabitha Andrews Orth, put together our 4th annual AE awareness video. This wonderful video features members who were kind enough to send photos of themselves in treatment and before and after shots. The AE Warriors Stepping Forward video was a great success so thanks to all who participated.

 

Our annual Virtual Arts Show 2020 was a beauty to behold. Filled with talent. Drawings and paintings, poems and short stories. It was an outpouring of emotion from the hearts of AE Warriors from all over the world.  If you ever want to know what it feels like to have AE look no further.

 

We rolled out a selection of AE awareness products that provide the support and encouragement of everyone in the AE community’s desires. AE Warrior Gifts, now available year-round, features the Royal Registry certificates for the AE warrior ™ and Caregiver. These certificates recognize the heroism in battling AE by the patient and caregiver for their heroism under fire.  Survival Kits for AE patients, caregivers, doctors, RNs, Kids, and parents were created, and many members gave these out.  Candy bar wrappers with fun encouraging statements were developed for fundraising efforts and are available for free as well as a unique AE Medical Identification card IAES developed.

 

With all these great things going on there was still a magnificent topper to the month. Tabitha and her team rolled out a first of their kind Autoimmune Encephalitis Trivia Playing Cards Deck. These remarkable cards were developed with assistance by Dr. Dalmau and have questions and answers about AE to use for quiz games with families, who want to know more about AE, doubles as a rehabilitation tool or can just be used as playing cards.  The original art on the cards was done by a fellow AE warrior, Julia King.  Complimentary decks are being sent out to AE doctors on our Doctor’s List.  The excited responses IAES is receiving from doctors about AE Trivia playing cards are filled with praise and congratulations in developing the ideal tool for AE patients, families and therapists. AE Trivia playing cards are on sale to the public and all proceeds will go to support AE research.  Well done team.

 

So outreach for the first annual Autoimmune Encephalitis Month was a big success and thanks to all the members, caregivers and volunteers who put in their time and hearts to make it happen.

 

Of course, the culmination of the month is February 22nd and World Encephalitis Day. Many members sent in updates around this date and pictures to show before and after views that we decided to share some of them in case you missed them the first time around. So here are some great pictures and a few quotes to go with them.

Renee Sanchez WED April 1 2020 blog - A Look Back at Autoimmune Encephalitis Awareness Month

 

From Renee Sanchez, “Well today’s the day! Almost exactly 5 months from her first seizure, which would be the last day of work and the beginning of this nightmare for our daughter, she is going back to work!”

From Paula Lee Ramirez, “Happy world encephalitis day

 

Paula Lee Ramirez1 - A Look Back at Autoimmune Encephalitis Awareness MonthPaula Lee Ramirez 2 - A Look Back at Autoimmune Encephalitis Awareness Month

 

From ICU September 2017 to now. Symptoms started in August 12, 2017. I wasn’t admitted and believed I was sick until  September 17,2017. Diagnosed on October 3, 2017 with ANTI-NMDA Receptor encephalitis. I have yet to relapse! ❤️

 

 

 

Lucy May Dawson - A Look Back at Autoimmune Encephalitis Awareness Month

 

Lucy May Dawson, “Today is World Encephalitis Day. I, like 78% of people, had no idea what Encephalitis was until the words fell out of my neurologist’s mouth after I was misdiagnosed as having had a mental breakdown and had spent 3 months in a psychiatric ward…….Regardless, I am one of the lucky ones, and I hope that by continuing to post about encephalitis, someone will one day remember one of my posts when their loved one begins to act strangely, and they will ask their doctor to test for it, and it may just save a life”.

 

Daisy Garuvadoo - A Look Back at Autoimmune Encephalitis Awareness Month

 

Daisy Garuvadoo: World Encephalitis Day today, from being critically ill with Anti-NMDA Receptor Encephalitis in Nov 2017, 2 years ago, having to relearn to walk, speak, to brush her teeth. to get dressed, to read, to write, to learn basic maths, to tell time and to regaining her cognitive abilities to Medical School and thriving. Yesterday, my daughter was honored for her research project related to Intrathecal procedures at her Medical School. INTRATHECAL RITUXIMAB TREATMENT(though the spine) IS WHAT SAVED HER LIFE.

 

Kimberly Anne Thompson - A Look Back at Autoimmune Encephalitis Awareness Month

Kimberly Anne Thompson I beat this. I have no lasting side effects. But awareness is so important… Because Encephalitis often presents with psychiatric symptoms it is often misdiagnosed… I spent six weeks in a Psychiatric Hospital originally diagnosed with having a Nervous Breakdown. I was given meds that only made My condition worse. It wasn’t until I started having Seizures and the Encephalitis began affecting My Heart that I was transferred to ICU and had a Lumbar Puncture which showed I had Anti-NMDA Encephalitis…. It is this delay that kills. I urge all Medical Professionals to consider Encephalitis in Patients that present with Hallucinations for the first time… You could save a life.”

 

Grace Harimate - A Look Back at Autoimmune Encephalitis Awareness MonthGrace Harimate, It is world Encephalitis Awareness day today yesterday in NZ time…. as I contemplated sharing these images and my story, my heart was pounding … I wanted to forget but this ordeal you’ll never forget…I was misdiagnosed and mistreated with bipolar taking the wrong medications and wrong treatment for 6 years from 13y to 18y. Spending most of my teenage years in the mental health ward. But so glad I met the most amazing people in those years…..The hard part was to come when I woke up from a two-year coma… I was fully blind for one-year memory loss still tube fed etc.
I was determined to walk … determined to get my eyesight back determined to get back on that horse determined to get a job … I walked into my 21st blind.

 

These awesome warriors and their brave care givers look at World Encephalitis Day and the new Autoimmune Encephalitis Month as a milestone. Where was I last year and where am I now? Some who have been floundering in a wilderness of lost memories have found their way or at least see a light at the end of their tunnel. Some are still, though making progress, struggling with issues others cannot even begin to imagine. Not only one year at a time but moment to moment. Some have been in comas only to wake up to a new truth, new situation, others are missing months or years of their lives. People they will never see again and new members of family and friends they are only meeting now. Such is the nature of Autoimmune Encephalitis. Your own body turning on you and messing up your brain. Sometimes making you hear, see, taste or smell things that are not there. Trying to make the family and friends in their lives understand the impossible.

March on brave warriors, continue to fight and savor your special month and the day set aside for you every year. May your lives look better next February.

 

Your generous Donations allow IAES to continue our important work and save lives! Due to the coronavirus pandemic, the need for our services has surged exponentially. Some cases of COVID-19 have affected the central nervous system and medical researchers are suspecting the infection could cause ADEM, type of Autoimmune Encephalitis. Donations of any size are vitally important to meet the increased need in our community. If you have the ability to set up a reoccurring monthly donation, it will be greatly appreciated and will immediately begin to help patients and families during this historic time.

seal - A Look Back at Autoimmune Encephalitis Awareness Month

 

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

 

why zebra - A Look Back at Autoimmune Encephalitis Awareness Month

Announcing Autoimmune Encephalitis Trivia Cards

Announcing Autoimmune Encephalitis Trivia Cards

The Biggest World Event Occurring in celebration of World Encephalitis Day 2020. The First AE Product in the World! A Real Game Changer.

Created by

International Autoimmune Encephalitis Society

in collaboration with Dr. Josep Dalmau

(World renown expert who identified the disease and put AE on the map. All proceed directly support Dr. Dalmau’s research group.)

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Ships Worldwide!!

 

Flyer Trivia Cards 1 232x300 - Announcing Autoimmune Encephalitis Trivia Cards

 

 

 

 

Download Flyer

 

 

 

 

 

 

  • In Collaboration with Josep Dalmau~ All proceeds directly support Dr. Josep Dalmau’s research group.

  • Creator/Author: Tabitha Orth~IAES President

  • Medical Editor: Dr. Daria Muir~IAES Secretary/Board of directors

  • Cover Art: Julia King~ Facebook/artbyjuliaking

  • Technical Assistant: Melody Wilson~IAES Technical Director

AE Awareness Month 2020

AE Awareness Month 2020

International Autoimmune Encephalitis Society founded AE Awareness Month in 2020 to shine a light on Autoimmune Encephalitis. AE Awareness Month is the biggest month of the year for the AE community.  It is a time when the entire community comes together to raise awareness of this treatable group of diseases.

Our main goal is to raise awareness among the public and medical community, especially first responders such as Psychiatrists and Emergency Room Clinicians, about AE and its impact on patient’s lives and the lives of the family members, loved ones and caregivers who support them.

Anyone can get involved in this International effort. Get involved today to shine a light of autoimmune encephalitis.

1.

Autoimmune Encephalitis Trivia Playing Cards

AE Trivia Playing Cards

IAES in collaboration with Dr. Josep Dalmau has created the first product in the world specifically addressing the needs of the AE Warrior™ and those impacted by AE.  ALL proceeds will support Dr. Dalmau’s research group. Stay tuned for the announcement of this exciting educational and rehabilitation tool.  It is destined to become the most vital product anyone touched by autoimmune encephalitis should purchase.  A true game changer in helping you to become a strong advocate, receive an outstanding educational foundation about AE doubles as a rehabilitation tool!

 

 

Trivia card ad 1 FB - AE Awareness Month 2020

2.

Become an IAES Angel and receive a facebook picture frame announcing that you have

The IAES Angel has lifted IAES upward by ensuring that comfort, guidance and improved health is brought into an AE patient’s life. IAES Angels are motivated by their Spirit of giving. They are Champions in raising AE awareness.

 

When you become an #IAESANGEL, International Autoimmune Encephalitis Society will send you this badge and profile frame to place on your Facebook page or Website.  As badges ‘take flight’ heralding IAES has been ‘touched by an angel’, others will take notice and they too may find their wings. Together, we will create a future where AE is eradicated from this world and only referenced in medical history books.

 

 

 

 

 

become - AE Awareness Month 2020

3.

AE Warrior and AE Caregiver Royal Registry Certificates

Bestow these certificates on your AE Warrior™ or Loved ones

The Royal IAES Registry designates The AE Warrior™ and AE Sentinel with Royal Title. In recognition of their heroism under fire. The Royal IAES Registry is the highest honor to be bestowed upon those engaged in the mighty autoimmune encephalitis battle. Without warning and within an instant, these unprepared citizens were thrust unto a perilous fire raging battlefield. To fight demanded that they dig deep into the depths of their soul for the inner-strength they had to summon to save their life or the life of the one they loved. This act is so rare IAES sanctifies and affirms by sealed decry the bestowing of Royal Title into the IAES Registry.

 

 

 

 

AE Warrior 2020 Certificate watermark - AE Awareness Month 2020

4.

Watch and Share our Awareness video AE Warriors Stepping Forward

AE Warriors Stepping Forward

This inspiring video shows the wide age range and diversity of AE patients, it explains what AE is in simple terms and provides key RED FLAG warnings to any medical professional who views it. This is IAES’ 4th annual awareness video. Proceeding videos have had a powerful impact on raising AE awareness and has lead to many patients receiving an accurate diagnosis.

 

5.

Get your Story in your Local Newspaper or Television Station

Breaking News!

IAES has done the work for you. Download our press release and directions. Reports will use quotes from experts cited in the press release as well as contacting the doctor who diagnosed you. This raises awareness on a much larger scale and only involves a few simple steps.

 

 

 

the gap message 2310064 1280 - AE Awareness Month 2020

6.

Hold a FUNdraiser or Awareness Event at Work, School or Your Home

FUNdraiser - AE Awareness Month 2020

By going to our FUNdraiser Page, you will see several ideas for all ages that allows you to have FUN and raise awareness for AE at the same time.

7.

Assemble AE Survival Kits


Share your love and encouragement by purchasing a survival kit, (Goodies not included). IAES has created 11 different variations of these kits that are bound to bring smiles of pleasure to those who receive them. Create a kit for your AEWarrior™, AE Mom, Doctor, Psychiatrist, Nurse, Infusion day, Child or Caregiver. These kits are available year-round.

 

 

 

 

Survival Kit AE infusion - AE Awareness Month 2020

8.

Raise Awareness with IAES Candy Bar Wrappers

Chocolate Therapy Candy Wrapper 5 9 16  x 5 3 8  - AE Awareness Month 2020

IAES has created 14 unique candy bar wrappers you can raise some sweet awareness.  These free wrappers include sentiments for people in the AE community and public.  These wrappers can be given as your simple act of kindness or used as a fundraising vehicle. They are a wonderful way for children and siblings to get involved in fundraising and raising awareness as well.  Candy wrappers will be available throughout the year.

9.

Print and share this AE Infographic

infogram - AE Awareness Month 2020

Post this Infographic throughout the month on your social media platforms and also download it onto card stock paper and give it out at school, work, gym or your place of worship.

 

10.

The IAES Virtual Art Show

ae - AE Awareness Month 2020

Tour the IAES Virtual Art Show and share the link on your social media platforms. Showcased is art in a variety of forms done by patients, siblings and caregivers of all ages. Experience a special insight into AE through their eyes and experiences.

 

World Encephalitis Day, February 22nd 10 Simple Ways You Can Participate

World Encephalitis Day, February 22nd 10 Simple Ways You Can Participate

February 20, 2019 | Tabitha Andrews Orth

World Encephalitis Day is the Friday, February 22nd. This is a single day when everyone in the Autoimmune Encephalitis community works to bring awareness to AE.  If you have AE or know a loved one battling the disease, your participating can make all the difference in the world.

What can you do to participate?

1. Use a profile frame on your FaceBook profile picture to raise awareness from now until WED

72f61a 9d7df361d29c4bfea2c67c7ad32f221c mv2 - World Encephalitis Day, February 22nd 10 Simple Ways You Can Participate

 2.  Encourage people to tour our Virtual Art Show. Amazing and inspiring art done by patients and their loved ones which include stories of the artists.  Share the link on all your social media and post it on your timeline.  You will find the Art Show under Inspiration Gallery on our website.

72f61a bfc66924ce924ddcb08925aa4d8c24c3 mv2 - World Encephalitis Day, February 22nd 10 Simple Ways You Can Participate

 3.  Create a FaceBook fundraiser for IAES to support our mission in spreading awareness in the medical community/general public, helping patients/families reach best outcomes and encourage research.

72f61a fbbf3d6a0a974b93891ac83796dee835~mv2 - World Encephalitis Day, February 22nd 10 Simple Ways You Can Participate

 

4.   Post our awareness video: You Are The Reason ~on World Encephalitis Day~  utilize all your social media platforms.  This year’s video has already surpassed our expectations in reach. Your post may save a life by leading a patient to become accurately diagnosed.  

 5.  Become a card carrying member of International Autoimmune Encephalitis Society. For as little as $20 a year, you can become a ‘Basic’ member.  Your membership includes a small gift of thanks from IAES along with your membership card. 

72f61a 73cc861240514b5280606b4242a53cc9~mv2 - World Encephalitis Day, February 22nd 10 Simple Ways You Can Participate

 

 6. Share/Post this informative meme that explains what Autoimmune Encephalitis is in easy to understand language.  Share it on all your social media platforms.  A Downloadable/printable version is located on our Living with AE page’ on our website. 

72f61a 8ae3ddf7f74642f98f3e76ac6fa25680~mv2 - World Encephalitis Day, February 22nd 10 Simple Ways You Can Participate

 7.  Make a $10 donation to IAES on World Encephalitis Day 

8. Direct people to our website 

9. Use #RED4WED #WED #Worldencephalitisday #IAES in your posts. Tag friends and ask them to share your posts so more people are reached.

10. Distribute the Gold Standard paper: A clinical approach to diagnosis of autoimmune encephalitis.  This vitally important paper was written by 26 experts around the world who collaborated to ensure that a patient with AE be easily identified in any hospital with equipment readily available. 

72f61a 205b1b9fdf3f40bcb2cc302dca594563 mv2 - World Encephalitis Day, February 22nd 10 Simple Ways You Can Participate

International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. 

Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

AE Warrior Gains His Wings ~ World Encephalitis Day Special Edition

AE Warrior Gains His Wings ~ World Encephalitis Day Special Edition


Donate to Support IAES and our Life Saving Mission


International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

Your Tax deductible donations help us save lives and quality of lives.

Raising Awareness For Autoimmune Encephalitis Through February Until World Encephalitis Day February 22nd

Raising Awareness For Autoimmune Encephalitis Through February Until World Encephalitis Day February 22nd

Heather Smith’s story 

 

Hi Everyone! Today I thought I would share my story, at least to date. I’m 41. About a year ago I had a gastric bypass and have since lost about 100 pounds. I was the healthiest I had ever been in my life. Happy and really living life for the first time in many, many years. The migraines that had plagued me since my teens were gone. So was the type two diabetes, high cholesterol, etc.

About 3 months after the bypass everything changed. I started getting severe headaches. The kind where you would drop anything in your hands and just grab hold of your head. The kind where you can’t think, can’t eat, can’t do anything but pray the pain would stop. I was seen in the ER on at least 7 occasions. The doctors there just kept saying it was dehydration, the rapid weight loss from my bypass, and/or my migraines. They would not listen to me when I told them this felt nothing like the migraines that I have had all my life.

At the same time, myself and my family began noticing other changes. I was dizzy all the time. Walking in to walls at work, stumbling, and getting tunnel vision. My husband noticed changes in my speech, especially when I was tired. I would stutter, have trouble finding my words, or completely blank out in the middle of a sentence and not remember what I was going to say. Finally, on July 28, 2017, I went in with the worst headache I had ever had. The doctors, tired of seeing me, finally decided to order and MRI. The MRI showed 3 white matter brain lesions; #1 in the right superior parietal lobe, #2 in the left peritoneal region, and #3 in the left temporal parietal lobe. One of the left lesions looks like a MS type lesion, however the other two do not. I was admitted to the hospital and the doctors started looking for a cause.

Over the next 10 days I stayed in the hospital. The headache did not let up. The doctors ordered two different courses of High dose steroids, solumedrol and Depacon. I had no relief from either course. They also did multiple rounds of MRI’s, CT scan, blood work, and a lumbar puncture. The LP was positive for 2 oligoclonal bands. With no idea what was going on, I was discharged on day 10. By this point, I could not walk without assistance. I was prescribed stability crutches. I have rapid weakness, spastic reflexes, fatigue, head pain that is constant around the base of my skull, with multiple episodes of severe stabbing pain all over the crown of skull every day. I am dizzy and have vertigo 24/7. I have increasing difficulties in social situations and public spaces. I have tremors, and spasms that make my whole-body jump. I have insomnia. Bright light, moving lights and colors, and music all increase the head pain. I have stabbing pain behind my eyes that make my vision blur and eyes water. I have nausea and vomiting multiple times a week.

In October the doctors sent an encephalopathy panel to the Mayo Clinic for testing. I am NMDA negative, but positive for N-Type VGCC. This spurred them to do more CT scans to check for cancer. At this point they told me they suspected Autoimmune Encephalitis. The CT showed that I had an ovarian remnant left from a previous surgery as well as two tumors (believed to be endometrioma) on the left side and a small mass in the right abdominal wall. PET scan showed no activity in any of these locations and all masses are believed to be non-cancerous. I have also had a MOG test sent to the Mayo Clinic, but have not received any results from that testing. Currently, we are only treating symptoms. Gabapentin for the tremors and headaches, which does little to nothing. Trazadone to help me sleep, and promethazine for the dizziness. I am undergoing surgery on February 20th to remove the ovarian remnant and all 3 masses. My Endocrine Gynecologist does not believe that the masses are causing any of the Neuro problems. His notes state “Concern by neurology that ovarian remnant or tumor could be secreting a chemical causing her encephalitis. Low suspicion by OB/GYN for the remnant appears to be an endometrioma which are not known to produce these sorts of chemicals or hormones.” However, we are going forward with surgery to rule this aspect of the disease out.

All of my treatment is through the University of Iowa Hospital. I don’t see my Neuro again until a week after surgery. Thanks for sticking with my long story. I just don’t know what to do next or how to proceed. I’ve lost so much to this in the last six months. I’m basically housebound. I cannot drive, I lost my job, and my independence. I’m frustrated and constantly scared. Always waiting for the next bomb to drop.

Heather contacted International Autoimmune Encephalitis Society for help, support, and guidance. She has recently joined the Int’l AE Society Educational Support Group designed for patients with an AE diagnosis and their support people. We will be helping Heather through her journey and guide her in getting the best treatment possible for a best outcome.

72f61a 129d819a6c3e435db2e6354c7e32852b mv2 - Raising Awareness For Autoimmune Encephalitis Through February Until World Encephalitis Day February 22nd

First, make a donation to International Autoimmune Encephalitis Society, and provide your mailing address in the transaction. Every donation in the amount of $30 US or more will receive an AE awareness ribbon water bottle with the definition of what autoimmune encephalitis is on the back.a
When you receive your water bottle, e-mail a picture with you using your water bottle with your name and where you are from. All pictures will be posted on World Encephalitis Day, February 22nd.


International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.

Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

 

Your Tax deductible donations help us save lives and quality of lives.

Raising Awareness For Autoimmune Encephalitis Through February Until World Encephalitis Day February 22nd

February is our Month to Raise Awareness for Autoimmune Encephalitis

 

 International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.

Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

 

Your Tax deductible donations help us save lives and quality of lives.

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.

CONTACT US


352-527-2470

IAES@AUTOIMMUNE-ENCEPHALITIS.ORG

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