2023 Events
We have an amazing number of events and illuminations this year!
The virtual educational program being planned for Saturday, August 26, 2023 at 8 am PDT (11 am EDT, 5 pm CET). Register here for the free program.!
This year we have adult and pediatric experts speaking from around the world, breakout rooms for various diseases and lots of fun awareness videos and photos to experience highlights from international events and lighting. There is a opening comprehensive session on PFAPA, plus resources for patients of all ages, TNFAIP3/HA20, unclassified SAID, and updates on research. Translation provided. Register here to submit your languages needs, and questions for the speakers.
Illuminations and in-person events:
August 5th Boston, MA USA, and bridges around the region will be lit up orange.
At 7 pm EDT: Make sure to come to this fun event to gather with others to enjoy the lighting at Zakim Bridge, and have fun. All ages are welcome!
– Paul Revere Park has a green space and playground with a perfect view of the Zakim Bridge-
– Parking is in multiple lots by the park, but can be difficult to find and a 5-10 minute walk *Limited handicap spaces are available at the park entrance*
-Pizza and snacks will be provided. Please RSVP so we can ensure enough pizza is provided. Closer to the date a Evite will go out to have a more exact count for families
-Zakim Bridge is lit at dusk, and is best viewed at dark.RSVP here on the Facebook event page.
On August 5th, the Zakim, Long Fellow, Fore River and Burns Bridges in he Boston, MA USA will all be lit up!
Canada is being lit up all month!
August 5th, London, Ontario Canada: Autoinflammatory Awareness Month London Gathering 6:30-9:30 pm EDT: The Canadian Autoinflammatory Network is hosting lighting all around Canada. There will be a fun BBQ at Gibbons Park, London ON. Enjoy the park, splash pad, and activities.
End the night downtown as a group to view the city buildings lit up orange for awareness month and to toast to recognition, connection, and community.
All activities will be outdoors, for anyone feeling more comfortable to wear a mask please feel free to do so.
Please RSVP by emailing [email protected]
There will be a few minutes of Facebook live during the event for anyone who is interested in connecting and toasting with us virtually.
August 5th, Peace Bridge: Fort Erie Ontario, Canada /Buffalo NY USA
August 5th: Vancouver Convention Center (Olympic Torch) Vancouver, British Columbia, Canada
August 5th: Halifax City Hall, Halifax, Nova Scotia, Canada
August 6th CN Tower Toronto, Ontario Canada.
More sites in Canada later in August (see below)
August 14th, Syracuse, NY City Hall will be lit up orange for International Autoinflammatory Awareness Month! Come at 7 pm for this gathering, join the fun and help raise awareness. Thank you Makenzie and your family, and to the Syracuse City Hall.
August 19th, Lansing, MI event from 3-9 pm at Rudgate Manor 5150 Rudgate Circle Sterling Heights, MI 48310
In the month of August we ask that you place an orange light bulb on your porch, & shine it as bright as you can!
Please join us on Saturday, August 19th for a Spaghetti dinner with salad, to help us raise awareness for auto inflammatory disease. 100% proceeds go to the non-profit organization, the Autoinflammatory Alliance for studies & research.
All spaghetti and salad dinners are $20. There will also be gift baskets and other fundraising available at this event, & some fun with the one and only JoTown!!
August 22nd: virtual Narrative-Based Medicine Autoinflammatory Patient Workshop from 8-9 pm EDT. Hosted by the Canadian Autoinflammatory Network
This is a creative writing workshop for patients and families to reflect on their patient experiences using poetry, art, and writing pieces. Follow prompts and express yourself through your own words and then choose to share or just listen to the writing and experiences of others on a similar journey.
For registration details for this event email: [email protected]
August 26th: Virtual program 8 am PDT. Register here (info at the top of the page.)
August 26th: The Gilbert, Arizona Water Tower will be lit up orange, starting at 6:45 pm Pacific time (AZ) for all the enjoy! Water Tower Plaza 45 W Page Ave Gilbert, Arizona 85233
August 26th: Kansa City Union Station and Mercy Hospital lighting and event with fun activities, a fundraiser, great prizes, and Betty Rae’s ice cream for attendees.
The fun starts at 6:00pm
Meet on the North Lawn of the WW1 Museum (grassy area across from Union Station). Please Park in the u-shaped drive or West Visitors Lot and there is a footpath along the Westside to get to the North lawn. You can also park in the front lot of Union Station, where parking is $5. Map and more details on this event page.
Bring a blanket and/or lawn chairs if you prefer! Union Station (across the street) 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!
August 26th zoom online event-registration coming by August 3rd.
August 26th: Niagara Falls, Canada and US viewing in person, or click this link for the webcam
August 27th: Welland Bridge, Welland, Ontario Canada
Shops supporting awareness month:
Visit the Monkey & Bear Etsy shop to get all sorts of fun t shirts and gear-or ask to have items customized for your needs. Jessy is donating a generous amount of funds from all sales to support Autoinflammatory Awareness Month and the Autoinflammatory Alliance to support more research.
See all the amazing “orange collection” at Kanga Art on Etsy
For all sales in August, a portion of the proceeds will go to the Autoinflammatory Alliance. She’s made some unique art for August so be sure to check out her “Orange” collection – all handmade items! This collection will go fast, so order soon.
Mention “Autoinflammatory” or “Autoinflammatory Alliance” in a message with your purchase and you’ll get extra awareness goodies with your order.
2022 Events
Here is a link to the virtual Saturday, August 27, 2022 program with translation–featuring expert autoinflammatory doctors speaking on genetics, and many other topics for our patients, plus highlights from all the 2022 events and illuminations. https://us02web.zoom.us/rec/share/CIfm1SZB-ayoUufqNo4ZJmm4gKGDTGkJ_NgO_1IBU0XhLUHeHxZ3deQmrj4dANym.2VQs4NdxpB9XmV_8
-Nominate your Autoinflammatory Hero for Healthcare, Research or Advocacy here by August 23rd, 2022 for recognition in the program! We will be mailing honorees their recognition and awards in 2023: https://forms.gle/k5cAYyKTx2xVMU486
-Casting call! Shine your light on autoinflammatory diseases for International Autoinflammatory Awareness Month by submitting a short video (20-30 seconds or less) sharing what you have found helpful to better cope with you or your child’s disease.
All submissions will be included in a slideshow to be shared in our program. The deadline for all submissions is August 20th, 2022.
-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 21st so we can put them in our awareness month social media and our closing ceremony on August 27th.
-Visit https://autoinflammatorymonth.org/blog/shine-a-light-theme to learn more, download a sign to fill in and share your photos, and also see some of the building illuminations!
-Make sure you are ready to glow and light things up for the closing ceremony, wear orange or just come and join the fun!
-Submit “Shine a Light” videos or photos, lighting from landmarks lit orange or art by August 23rd to: https://www.dropbox.com/request/6P8VNhdjIjny7uRzIJCb
Or email photos or videos to: [email protected] if
Illuminations around the world 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!
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
Seville (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.
August 12th, 2022: Longfellow Bridge, Boston, MA not far from the Zakim Bridge will also be lit up orange! webcam: https://masswebcams.com/longfellow-bridge-charles-river/
August 12th, 2022: Fore River Bridge, spanning between Quincy and Weymouth, MA is lighting up orange!
Kenneth Burns Memorial Bridge photo credit: https://benefits.transportation.org/burns-memorial-bridge/
August 12, 2022: Burns Memorial Bridge spanning between Worcester and Shrewsbury, MA is also going to be lit orange over Lake Quinsigamond!
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 [email protected] regarding any image sharing. Thank you!
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: Register for our free, online program for patients, caregivers and medical professionals will have translation and will be recorded.
See the full program on the registration link: https://www.eventbrite.com/e/autoinflammatory-awareness-month-coming-together-2022-registration-401997594627
August 27, 2022 International Autoinflammatory Awareness Month Educational Program and Closing Ceremony!
Saturday, August 27, 2022 from 8-11:00 am PDT, 11am-2:00 pm EDT, 1700-2000 CEST) with breakout rooms after the main program is over.
FREE program with Translations in Spanish and French, with the option for other languages as needed. Requests for other languages must be submitted by August 21st to be added.
There will be talks from autoinflammatory experts (see full program below), special programming for children, fun videos from patients and lighting events from around the world, and breakout rooms at the end of the program for various diseases so patients can connect globally!
In addition, videos featuring patients and a showcase of all the global events and lightings of monuments orange around the world for International Autoinflammatory Awareness Month will be shown throughout the program.
-Get involved! See the details at the bottom of this program on how to share your videos, photos, and messages of inspiration.
-Nominate your Autoinflammatory Hero for Healthcare, Research or Advocacy here by August 23rd for recognition in the program! We will be mailing honorees their recognition and awards later: https://forms.gle/k5cAYyKTx2xVMU486
-See below or on autoinflammmatorymonth.org how other organizations, companies, and medical societies can become a participating supporter.
8:30 -9:30 am (PDT) Concurrent Children’s Event: We are collaborating with Project Sunshine to offer a wonderful, HIPPA complaint, child life specialist led, and fun Teleplay program for children of all ages from 8:30 am-9:30 am!
Children will be on a separate, secure platform for some fun games and activities, including: Movie-mojis – Disney/Pixar Edition,Art Mad Libs, Trivia – Amazing Animals.
There is a special registration coming for the children’s program with Project Sunshine. Please indicate your interest in this program, and your child’s age in your registration and we can send a registration link.
The Autoinflammatory Alliance has a planned partnership to offer programs for children with autoinflammatory diseases monthly. We’re excited for this opportunity with Project Sunshine!
The International Society of Systemic Auto-Inflammatory Diseases (ISSAID) Educational Committee has helped to plan and endorse this official International Autoinflammatory Awareness Month Educational Program in collaboration with the Autoinflammatory Alliance, Stop FMF, KAISZ and the Canadian Autoinflammatory Network and the CARRA Autoinflammatory Patient Advocacy and Autoinflammatory Network Development group, plus others. Thank you!
Learn more at the bottom of the page on how to get involved in this growing effort for International Autoinflammatory Awareness Month.
MAIN PROGRAM:
8:00 am Welcome, introduction to the program, how the Q & A and breakout groups will be managed, and how to access translation by Karen Durrant RN-President of the Autoinflammatory Alliance. Thank you to participating orgs, institutions.
Part 1: Looking at the whole spectrum of Autoinflammation, and overlapping symptoms and features:
8:10-8:30 am Dr Hal Hoffman will do a talk with some inspiration based on this recent paper by Dr Broderick and Dr Hoffman
(Start of the concurrent program for Children with Project Sunshine on a separate secure zoom platform)
8:30-8:40 am Dr Dedeoglu: Behçets-like disease autoinflammatory diseases, including HA20, RELA, and unclassified autoinflammatory cases.
8:40 am-8:55 am Q & A Panel With all the doctors in the program.
Part 2: Untangling Genetic Findings:
9:00-9:30 am Dr Broderick: A step-by-step presentation on genetic testing and interpretation
9:30-9:45 am Q & A Panel Genetics discussion with all the doctors in the program.
9:45-10:00 am Video Showcase: Featuring Autoinflammatory landmark lighting videos from around the world, Shine a light patient videos, and coping tips compilation videos. See the casting call area below to get involved and share your photos, and videos!
Part 3: The needs of the Adult patient, and transitioning to adult care, featuring:
10:00-10:15 am Dr Hausmann (pre-recorded) Transitioning to adult care
Dr Demirkaya: Transitioning and other topics to be announced
Part 4: Addressing psychosocial needs:
10:15-10:23 am Addressing Psychosocial needs talk by a Spanish social worker from Stop FMF
10:23-10:30 am Q& A for Transitioning, and psychosocial needs questions
Part 5: Collaboration, networking to improve patient care, and shared research efforts:
10:30-10:45 Dr Demirkaya-ACR/EULAR Task Force points to consider recommendations for Il-1, IFN, and upcoming MAS associated diseases.
10:40-10:45 Karen Durrant RN, BSN: Translational Autoinflammatory Research Network (TARN) initiative: history, shared goals for networking research, education. TASK FORCE collaboration w/ pt orgs, advocates, Drs and medical societies
10:45-10:50 Dr Dedeoglu: CARRA SAID Network Development & Advocacy research highlights
10:50-10:55 Dr Demirkaya, Dr Dedeoglu, Dr Broderick and others will share about the International Society of Systemic Auto-inflammatory Diseases (ISSAID) highlights and upcoming programs
Announcing our Autoinflammatory heroes and Pathfinders!
Closing remarks, thanks to our collaborators
11:00 am Breakout rooms for various disease groups open up! (all welcome) No official translation or recordings in breakout rooms
How to get involved and add to the program:
-Honoring our Autoinflammatory heroes and pathfinders! Make sure to submit your nominations here!
-We will showcase and thank all the supporting organization’s for International Autoinflammatory Awareness month. By August 23rd: Please email [email protected] or [email protected] for details on to have your organization logo included on our official site, and in the program.
-Casting call! Shine your light on autoinflammatory diseases for International Autoinflammatory Awareness Month by submitting a short video (20-30 seconds or less) sharing what you have found helpful to better cope with you or your child’s disease.
All submissions will be included in a slideshow to be shared in our program. The deadline for all submissions is August 20th, 2022. Please upload your videos to: https://www.dropbox.com/request/rGwJqfgz1w0eOQcj5QPW?fbclid=IwAR2IepbjO_3AH6dyK8P5NEZ0B-oNjiT2XelzZ4z6qmFvNG27Lom6Guc-ZVc
-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 21st so we can put them in our awareness month social media and our closing ceremony on August 27th.
-Visit https://autoinflammatorymonth.org/blog/shine-a-light-theme to learn more, download a sign to fill in and share your photos, and also see some of the building illuminations!
-Make sure you are ready to glow and light things up for the closing ceremony, wear orange or just come and join the fun!
-Submit “Shine a Light” videos or photos, lighting from landmarks lit orange or art by August 23rd to: https://www.dropbox.com/request/6P8VNhdjIjny7uRzIJCb
Or email photos or videos to: [email protected] if needed, or any questions
Sign up for the Australian Autoinflammatory Workshop!
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 for Autoinflammatory Diseases Kits are still available in limited quantities. We have gear for event use. Contact [email protected] 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.
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:
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 [email protected] so we can share it on this site, and on social media. Thanks!