Events

Help to Shine a Light for Autoinflammatory Diseases!

2022 Events

The illuminations will also include watch parties, or other events at many sites.


Please scroll down the page to also find information for Educational programs (virtual or hybrid) that will be held later in August in the US and Australia, open to all globally.

There are also many ways to get involved, wherever you are and submit your selfies, messages to be included in videos and slideshows that will be shown during the program on Saturday, August 27th, so look down the page to find out many ways to get involved!

Landmarks all around the world will be lit up orange for International Autoinflammatory Awareness Month!

This poster is available on our Download page. BOSTON now 8/12

August 1, 2022: Niagara Falls, Canada (and the USA) at 10 pm EDT for 15 minutes.

The regular light show at the falls is held at 8 pm. Join virtually, or in person as Niagara Falls is lit up in recognition and support for patients with Autoinflammatory Diseases. RSVP here on the Facebook event page. Or click this link for the webcam to watch from anywhere in the world!

The Canadian Autoinflammatory Network will do a Facebook livecast from their event page from Niagara Falls during the lighting for all to partcipate in this amazing opening to International Autoinflammatory Awareness Month.

A HUGE thank you to the Niagara Falls Illumination Board and everyone at Niagara Parks for making this viewing possible, and the Kinchlea family from Daniel’s Disease for hosting this event, along with the Canadian Autoinflammatory Network.

August 2, 2022: CN Tower, Toronto, Ontario, Canada

The CN Tower is the tallest freestanding structure in the Western Hemisphere and is a signature icon of Canada’s city of Toronto, Ontario skyline. This year the CN tower will light up orange for International Autoinflammatory Awareness Month on August 2nd.

As patients and families in Canada and around the world we are so grateful for the recognition and solidarity shown through this action!

Patients, families, doctors, researchers, and advocates, come and join us to enjoy the lighting; we will meet and view from the southeast corner of Roundhouse Park at 9:00 PM EST. The lighting will be most visible 1/2 hr after sunset.

To view virtually click the CN Tower night cam at: https://www.cntower.ca/#earthcam

We also hope to host a livestream from this page so be sure to follow the event!

A big thank you to everyone at the CN Tower who has helped to make this happen.”

And a special thanks to Daniel’s Disease and the Canadian Autoinflammatory Network for organizing this wonderful gathering and lighting opportunity!

August 2-7, 2022: London, Ontario Canada will have many buildings downtown lit up orange, and Western University! More details coming soon! Come join the fun! Visit the event page on facebook for all the details. Canadian Autoinflammatory Network will be hosting a gathering at 9pm EDT in front of the downtown RBC Place Building on Wellington and York, where we can shine a light on these diseases together. A special thanks to the Kinchlea family from Daniel’s Disease will be hosting this event, along with the Canadian Autoinflammatory Network.

Join STOP FMF for photos and awareness in Spain. RSVP and learn more here:

August 5, 2022: Seville (Sevilla), Spain
Sevill
e (Sevilla)
Torre del Oro-Fuente de las Cuatro Estaciones- Fuente de la Plaza de España de Sevilla
22.30h -Torre del Oro (the Golden Tower of Seville)
23.00h -Fuente de las Cuatro Estaciones. C/ San Fernando.
23.30h -Fuente de la Plaza de España.


August 5, 2022: Valencia, Spain
Ciudad de las Artes y las Ciencias (Museo de la Ciencia Príncipe Felipe en la Ciudad de las Artes y las Ciencias- Hemisferic- Palacio de las Artes) – Ayuntamiento Valencia
22:15h Museo de la Ciencia Príncipe Felipe en la Ciudad de las Artes y las Ciencias de Valencia.
22:30h Hemisferic
22:45 h Palacio de las Artes en la Ciudad de las Artes y las Ciencias de Valencia.
23:15 Ayuntamiento de Valencia.
23:45 Puerta del Mar

August 6, 2022: “The Wheel” at ICON Park, Orlando, Florida, USA will be lit up orange in honor of autoinflammatory disease awareness! Please come and enjoy ICON Park and this amazing awareness lighting location. Please RSVP on our Facebook event page.

ICON Park is a 20-acre, open-air, gate-free entertainment destination with plenty of fun adventures for the whole family. The perfect place to ride, dine, drink, and explore.

Located in the heart of the Orlando Entertainment District, ICON Park offers more than 50 amazing restaurants, funky bars, boutique shops, and can’t-miss attractions, all anchored by The Wheel, a jaw-dropping observation wheel that stands 400 feet – 40 stories – in the air. Visit other attractions including SEA LIFE Orlando Aquarium, Madame Tussauds Orlando, Museum of Illusions Orlando, and The Carousel on the Promenade. ICON Park also offers a diverse mix of restaurants for lunch, dinner, and late-night bites that satisfy a wide variety of flavors and cuisine. Find a unique collection of shopping and dining kiosks and explore each location as you stroll under the festoon lights along the brick promenade. Enjoy free parking and park admission. Learn more at ICONParkOrlando.com. Thank you ICON Park for lighting up orange for awareness!


August 6, 2022: Sakonnet Bridge, Rhode Island will be lit up orange! We just got word on August 2nd about this amazing location, and we hope that everyone in the area can come and see the lighting all along the bridge, not far from Newport, Rhode Island. It reflects on the water beautifully with the colored lights. A special thanks to the Rhode Island Turnpike and Bridge Authority for helping to raise awareness for autoinflammatory diseases with this lighting, and for the Wong family and others for requesting this location to be lit up.

August 10, 2022 Boston Children’s Hospital, Boston MA USA The Hale building roof top garden will be orange, which can be seen by children in the hospital and those outside starting at 6 pm! Thank you Boston Children’s and to the doctors and other staff at the Autoinflammatory Disease Clinic for helping with this wonderful initiative. More details on our Facebook event page.

DATE CHANGE! Now Aug 12th, 2022: Zakim Bridge, Boston, MA USA will be lit up orange at dusk!

Gather at 7:30pm EDT to watch the Zakim Bridge light up orange at Paul Revere Park, Charlestown MA. RSVP here on the Facebook event page.

Look for orange balloons marking off the area for the group viewing party.

The park is open to the public until 11pm. If you cannot attend in person, tune in to see the bridge lit up on this webcam link.

Thanks to the Wong family for hosting this event, and they will be giving out some of our gear, have snacks, and enjoy raising awareness for autoinflammatory diseases.

Please share any photos or videos from any location to share in our program on August 27th by uploading them to our secure Dropbox here or you can email karen@autoinflammatory.org regarding any image sharing. Thank you!

Union Station in Kansas City, MO will be lit up orange on Aug 26th for International Autoinflammatory Awareness Month! Please RSVP on the Facebook event page.

August 26, 2022 Union Station, Kansas City, Missouri USA will be lit up orange this year, At 6 pm, join others at a fun event, including free Ciao Bella Ice Cream and other fun will be available for all attending. Please RSVP on the Facebook event page.

-Meet outside Union Station on the East side (concrete area, facing Main street).

-Please park in the front lot, take a picture of your license plate – parking is $5.

At 7:30pm we will head across the street to the north lawn of the Liberty Memorial (2 Memorial Dr. Kansas City, MO 64108) to turn on our sparkle balloons and watch Union Station illuminate in ORANGE! Bring a blanket and/or lawn chairs if you prefer!

Look for lit luminarias and balloons.

Union Station will also be open if anyone needs an AC break, more food, or shopping before the lighting.

This year there will be a prize drawing for a new Bushnell Range Finder & Wingman – amazing prizes for those who love to golf! A $50 minimum donation required to be entered to win! For every $50 you donate, another entry will be added under your name. Click here: https://www.mightycause.com/story/0zuqzf to donate. We will draw TWO names during the event, but you don’t have to be present to win.

Donations benefit the Autoinflammatory Alliance, that is supporting all the events, virtual programs with translation, and supplies for all the North American, and other sites globally, and other costs for International Autoinflammatory Awareness Month. All donations are tax-deductible in the USA.

A special thanks to the Fisher family for leading this event, and Bushnell for the prizes.

Educational programs for August 2022:


Saturday, August 27, 2022: Save the Date! Our free, online program for patients, caregivers and medical professionals will have translation and will be recorded. More details and registration is coming soon!

Monday, August 29, 2022: 2nd Australian Autoinflammatory Workshop

at the Walter & Eliza Hall Institute in Melbourne from 9am-6 pm AEST. The draft program, and a link to register, can be found here: https://www.aadry.org/symposium.

The meeting will be a hybrid format (in-person and online). Registration is free for online participants. Or go here to register directly for the program.

An overview of the latest discoveries into the causes and treatment of autoinflammatory disorders, with plenary talks from Prof Marco Gattorno (Italy; President of the International Society of Autoinflammatory Diseases) and Dr Ivona Aksentijevich (USA; Inflammatory Disease Section/Clinical Genetics Service, NHGRI, NIH) plus invited talks from Australian laboratory-based and clinical researchers, including a final session for patients and families, featuring a Q&A panel of clinical experts with morning and afternoon tea, and lunch will be provided.

-Post anything you find interesting on our Facebook or Twitter Autoinflammatory Awareness Month pages to raise awareness to your social circles, and use the #shine4autoinflammatory hashtag, or ad some others listed below.

🎥 Casting call! 🎬 Shine your💡on autoinflammatory diseases for Autoinflammatory Awareness Month by submitting a short video (30 seconds or less) sharing what you have found helpful to better cope with you or your child’s disease.

We all loved last year’s video highlighting our patients! All submissions will be included in a slideshow to be shared in our program on August 27th in celebration of this year’s Autoinflammatory Awareness Month.

Deadline for all submissions is August 7, 2022. Please upload your videos to: https://www.dropbox.com/request/rGwJqfgz1w0eOQcj5QPW?fbclid=IwAR2IepbjO_3AH6dyK8P5NEZ0B-oNjiT2XelzZ4z6qmFvNG27Lom6Guc-ZVc

We can’t wait to see your resilience! 🔥

Download and print out some of our awareness graphics and take a photo with glow, candles or lights and your message in a photo, or up to 10 seconds of video, and upload your photos or videos to our secure dropbox by August 15th so we can put them in our awareness month social media and our closing ceremony on August 27.

Please use the #shine4autoinflammatory hashtag too.

Hashtags to use:

#shine4autoinflammatory
#autoinflammatory
#august4autoinflammatory
#autoinflammatoryawareness
#hope4SAID (SAID means “systemic autoinflammatory disease”)
#morethanafever
#notjustafever

2021 program recordings:
Link to to watch the August 7th patient program is here, with closed captioning.

Link to watch the August 28th patient program is here, with closed captioning.

2021 past events:
Shine a Light Wherever You Are for International Autoinflammatory Awareness Month kicked off with a special video premiere at the start of August, and the mailing of “Shine a Light” Awareness Kits to light up the world orange and raise awareness.

Learn more about the “Shine a Light” Theme and how you can get involved here!
Video link to to watch the August 7th patient program is here, with closed captioning.

Video link to watch the August 28th patient program is here, with closed captioning.

We have audio recordings in French, Spanish, Ukrainian, and Russian for the translation that will be available soon to listen to as mp3 recordings.

Videos of the building lightings around the world:

Kansas City, MO at Union Station, and Children’s Mercy hospital.

Building lightings in various locations in Barcelona, Spain and elsewhere in Spain.

Video from the “Shine a Light for Autoinflammatory Diseases” campaign submitted by patients and medical professionals worldwide, sharing their messages to increase awareness and support to others globally.

The “We are More” video features patients doing things that they love, and can do, thanks to being diagnosed and on beneficial treatments, and is very inspiring. Patients sent in videos during August, that were put together for the closing ceremony on August 28th during our patient program.

Saturday, August 28: 8am-10 am PDT (17-1900 CEST) International Autoinflammatory Awareness Month Closing Program (virtual and free to all, with translation available.) There will be talks from patient advocates and autoinflammatory disease experts from around the world, with a special closing ceremony featuring people “shining a light for autoinflammatory diseases” and more!
-Keynote talk from Karen Raymond, patient and scientist about her journey to a diagnosis, complex disease and how it drove her to pursue a career in scientific research for autoinflammatory diseases, and how she worked to get her own case report published.
-Focus on Psychosocial needs by specialists from Boston Children’s

-Expert doctors from Spain, the Ukraine, the US and elsewhere will be presenting.
-Patient organization advocacy and research sharing, patients sharing their story

-“Shine a Light on Autoinflammatory Diseases” Closing ceremony of patient videos, and photos from around the world, building lighting and thanks to our sponsors and all the patient organizations and patient support groups involved in the awareness month.

Make sure to share your photos and 15-20 second videos online with the #shine4autoinflammatory hashtag, and please upload them to our dropbox by August 25th so we can add them to the closing ceremony video!

Friday, August 27, 2021 7-9 pm CDT Union Station will be lit orange for International Autoinflammatory Awareness Month!
Come shine a light with us as we watch Union Station in Kansas City light up the night in orange in honor of Autoinflammatory Awareness Month!

More details on our facebook event page here.

Fun games, an ice cream truck serving treats and giveaways! Please come celebrate with us to further awareness and show support for those living with these rare diseases???

Where: Union Station & North Lawn of the Liberty Memorial.

7:00 pm We will meet outside of Union Station on the East side (concrete area, facing Main Street). Please park in the front lot, or the garage. Parking is $5.

An ice cream truck will be there for everyone to enjoy cool treats.

8:30pm we will head across the street to the north lawn of the Liberty Memorial (2 Memorial Dr, Kansas City, MO 64108) where we will play games and have fun until the lighting comes on!Bring a blanket and/or lawn chairs if you prefer! Look for the lit luminarias and signs.

Union Station will also be open if anyone needs an AC break, more food or shopping before the lighting. We can’t wait to see you there! Please visit the facebook event page to get updates and show your interest, so we can best plan for all the attendees.

Union Station, Kansas City, MO will be lit up Orange on August 27th and 28th in the evening in honor of International Autoinflammatory Awareness Month!

Tuesday, August 31, 2021 11 am EDT Come join the International Foundation for Autoimmune & Autoinflammatory Arthritis, the Systemic JIA Foundation, and the Autoinflammatory Alliance on #StillsDisease research and clinical trials, sponsored by Sobi and Cerecor. Click here to register for this free program.

“Shine a Light” Autoinflammatory Awareness Month Kit

Shine a Light for Autoinflammatory Diseases Kits are still available in limited quantities. We have gear for event use. Contact karen@autoinflammatory.org for requests.

Building Illuminations in Spain initiated by STOP-FMF

August 6: 21-2200 CEST Illumination of  Ciutat de les Arts i les Ciències (the City of Arts and Sciences), Valencia, Spain-images below from their twitter page. Gracias!

August 6-7: 21-2200 CEST Illumination of Valencia City Hall.

August 6-7: International Autoinflammatory Awareness Month Banner on the balcony of the Valencia City Hall.
Support for the Lighting and decoration of the buildings in Valencia, Spain includes:

CIPF, CREER, FEDER, MICOF, SEMAIS, SERPE, coordinated by Stop FMF learn more about all these wonderful. supporting and collaborating organizations on our “Participating Organizations ” page.

Saturday, August 7, 2021 8 am-10:30am PDT (17-1930 CEST) International Autoinflammatory Awareness Month Opening Program (virtual, free to all)

Watch the recorded presentation here.
-Focus on the unmet needs of patients, especially the undiagnosed and unclassified.

-Presentation of patient survey data of autoinflammaotry challenges globally.
-SURF vs PFAPA vs undifferentiated/unclassified autoinflammatory disease (uSAID)

-Updates on new research for genetics, treatments, treating to target, new possibilities on the horizon.
-Featuring talks and Question and Answer Sessions with autoinflammatory disease experts, including: Dr Hal Hoffman, Dr Scott Canna, Dr Lori Broderick, and Dr Fatma Dedeoglu, and Dr Kuemmerle-Deschner.
– Sessions for patients to discuss topics of interest, and connect globally.
-Closed captioning and live translation.

Luminarias (LED Candles included) from our “Shine a Light” Autoinflammatory Awareness Month Kit

August 21, 7 pm EDT: The Purple Playas, supporters of International Autoinflammatory Awareness Month. They have a great movie premiere virtual event this weekend. The Purple Playas help many patients with rheumatic diseases (including autoinflammatory diseases) and this is a movie that all can relate to, and enjoy.
Join the Purple Playas for a special viewing of the short-film, “Revenge of the Electric Cart”. This 12 minute film, Revenge of the Electric Cart, is a semi-autobiographical short film based on the writer-director’s relationship with her mom. A young girl whose mother has rheumatoid arthritis uses humor to overcome prejudice in the grocery store. Directly following the viewing, we are hosting a “Meet and Greet” with Rikki Elizabeth Stinnette, writer-director, Amanda Shafer, actress, and Dallas White, Producer. 70% of ticket sales benefits Purple Playas Foundation.
More info on their facebook event page.

A special thanks to our 2021 Sponsors for our Patient Programs on August 7th and 28th, language translation for the programs, and patient autoinflammatory awareness kits.

Diamond level: Sobi

Gold level:

Kiniksa Pharmaceuticals, and Sanguine Biosciences Inc.

Bronze:

AB2Bio

2020 Events

August 22, 2020 from 1-3 pm EST: The Boston Children’s Hospital Autoinflammatory Disease Family Workshop will be hosting an online conference for patients and families with autoinflammatory diseases, in honor of Autoinflammatory Awareness Month. Click here to register . The program will include pre-recorded and live medical, school and wellness talks. We hope to have an informative conversation and opportunities for Q&A.

Schedule

1PM-2PM: Medical Presentations and Scientific Talks

“What Are Autoinflammatory Conditions” – Jonathan Hausmann, MD

“Update on Research and Approaches to Discovery and Treatment” – Lauren Henderson, MD, MMSc

“Inflammation and the Gut/Anti-Inflammatory Diets” – Sophie Burge, MS, RDN, LD

“Treatments, Challenges, Medications and Side Effects” – Fatma Dedeoglu, MD

Question and Answer Session

2:00-2:15PM: Break

2:15PM-2:45PM: School and Wellness Talks

“Partnering with Schools: Is the School Nurse at the Table?” – Shanyn Toulouse, MEd, BSN, RN, NCSN, Northeast Regional School Nurse Consultant

“Stress Management and Coping during COVID-19” ­– Judith Siegel, LICSW and Jodie Shea

2:45-3PM: Program Closing

Please register for the event here: https://forms.gle/B2mUQjgUbU6rwCJM9. Zoom links will be sent to all pre-registered attendees.

Learn more, and watch excerpts from the previous 2018 Autoinflammatory Diseases Workshop on the autoinflammatorydiseases.org blog page.

August 25, 2020 from 7-9 am PDT: Cure Blau Syndrome is hosting a Virtual Blau Syndrome Research Panel. Register here.

September 7, 2020 : Still’s Disease Awareness Day 2020 From the International Foundation for Autoimmune and Autoinflammatory Arthritis (AiArthritis):
“Still’s Disease Awareness Day was established in 2015* to celebrate Still’s patients globally, by all patient organizations and health service providers. The goal is to increase awareness and education about Still’s so we can expedite diagnosis, improve disease management, and help patients explain their disease to others. This is not an organization-specific event. We encourage all groups to participate, including raising funds for their organization. #StillsDayLearn more at www.aiarthritis.org/stillsday

*This day was originally established by the International Still’s Disease Foundation, which dissolved in 2017. Upon their closure, they requested AiArthritis maintain any remaining resources, including hosting this day

This year for Still’s Disease Awareness Day, AiArthritis will be launching Patient-Reported Still’s Disease educational materials and a global media awareness #MyStills campaign. While there are signature symptoms associated with this disease, it strongly affects each person slightly different. For too long, those living with Still’s–and their families–have experienced delays in detection and diagnosis partly because early symptoms and clinical disease features are uniquely blended to each persons’ journey. Understanding how Stills affects the general population – and the individual – is key to expediting awareness, diagnosis, research and potential remission.  The campaign will include a video, featuring 5 persons affected by Still’s Disease differently, as well as a website pages and a worldwide social medial campaign, which will encourage as many people as possible to share their unique #MyStills experience. The goal is to continue the awareness posts throughout the year and into 2021.

We want to share your upcoming events for Autoinflammatory Awareness Month! Please submit your events through our Contact Us page, or by email to autoinflammatorymonth@gmail.com so we can share it on this site, and on social media. Thanks!