Events

2021 Events

Help to Shine a Light for Autoinflammatory Diseases!

Shine a Light Wherever You Are for International Autoinflammatory Awareness Month will kick 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.

Saturday, August 28: 8am-10 am PDT (17-1900 CEST) International Autoinflammatory Awareness Month Closing Program (virtual and free to all, with translation available.) Registration for the August 28th program is open! Plans still being finalized. Click here to register. 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! The program is free, but you need to click here to register.
-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!

Union Station in Kansas City, MO will be lit up orange on Aug 27-28th for International Autoinflammatory Awareness Month! More info on our facebook event page!

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 available to order now at this link. Note that we are having to charge a minimal fee to help cover some of the shipping costs, and shipping in the US is included.

There is a minimal charge added for worldwide shipping, due to shipping costs being very high right now, but the kit value of items is worth a lot more than the minimal cost, and 100% of the funds will go directly to the cause and support International Autoinflammatory Month Kit mailings, and we are spending more than the cost listed, or extra cost for international shipping to get these out to all interested, but had to add in a small cost to help make this possible.

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!