AiArthritis Voices 360 Episode #25
Air Date: April 26, 2020
This week join your patient co-host Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, as she announces a significant change in plans for the AUTO Ball and tells you how to get involved too - from YOUR sofa!
Since our inception in 2011, we have been functioning primarily as an online entity. But in 2020, we planned to increase our impact by introducing our organization to a larger audience - OFFLINE. Then, COVID-19 happened and ironically, we have had to reroute our plans to venture out, moving our re-introduction to the world back to the online space ... where we have been changing the world from our sofas since 2011.
Our goals remain the same: raise global awareness for AiArthritis diseases, teach the world more about who we are and what we do, and raise funds to allow this valuable work to continue. As Effie Koliopoulis recently pointed out in Episode 20 of our At The Table "mini-sode" series , this isn't our new normal - so perhaps if you are having issues adjusting to staying online we can help you learn to make the most of it! Listen to this episode so you can learn how to participate in the AUTO Ball online from the safety and comfort of your home. New Paragraph
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Now it's YOUR TURN to join the conversation!
We want to know what you think! By continuing the conversation with your opinions and perspectives - we all get a better understanding of the problems facing our community. Better yet, through these conversations we can start working and developing solutions.
We mean it when say 360. Not only do we want your input anytime and anywhere, but we also are eager to see where the conversation will take us. So please, "pull up a seat at the table" and let's start talking!
Email us at podcast@aiarthritis.org, message us on social media (find us by searching for @IFAiArthritis)
Our AiArthritis Voices 360 Talk Show is just a piece of larger program - the AiArthritis Voices Program.
AiArthritis Voices is our program where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives.
If you want to get more involved, and see more of the opportunities we have for you (and all stakeholders) please check out the AiArthritis Voices Program. Unite with others around the world to talk, learn, and connect.
Show Notes: Episode 25 - "Online AUTO Ball"
0:52 - Tiffany welcomes listeners to today’s episode
1:16 - Tiffany is a patient living with non-radiographic axial spondyloarthritis
1:30 - One of the first projects that the International Foundation for Autoimmune and Autoinflammatory Arthritis accomplished was the establishment of World Autoimmune and Autoinflammatory Arthritis Day on May 20th 2012
1:46 - World AiArthritis Day actually lasts for 47 hours because it begins in the first timezone and ends in the last time zone on the 20th of May to bring an international awareness to our community of diseases
2:33 - World AiArthritis Day was designed to be conducted primarily online because most of the patients impacted by autoimmune and autoinflammatory diseases suffer from chronic fatigue which can make flexible working hours essential
4:51- the common experience for patients living with AiArthritis diseases has many similarities with the “new normal” experience of the general public while social distancing during the COVID-19 pandemic
5:44 - Many events are being pushed to online platforms due to the COVID-19 pandemic
6:13 - EULAR (European League Against Rheumatism) is hosting their annual conference online this year
7:18 - AiArthritis has been online since our inception because we felt it was the best way to unite a community that may or may not be able to meet in person
9:50 - AiArthritis had planned a gala called the Auto Ball for May 2nd at the National Museum of Transportation in St Louis, MO to kick off the celebration of World AiArthritis Day
10:17 - Tiffany explains all the activities AiArthritis had planned for the Auto Ball like live podcasting, prizes for contests, awards for thematic attire, and special patient guest, race care driver Angela Durazo
13:01 - Due to COVID-19, the in-person Auto Ball must be postponed to May 2021
13:45 - The three goals of the Auto Ball (raising awareness for the organization, raising awareness for AiArthritis diseases, and raising funds to support the organization) must be accomplished online during the pandemic
15:00 - AiArthritis invites the entire world to join us for the online version of the Auto Ball
17:14 - Special podcast guests like the Rheumatology Nurses Society, Forward Databank, and Washington University Rheumatology can still present special information for you
17:38 - Special presenters can still give speeches on Facebook Live
17:47 - Any museums or companies with auto affiliations or local car clubs are invited to participate
18:01 - Perhaps we can have a virtual car show!
18:32 - Celebrity guest Angela Durazo will still be participating online
18:47 - Visit https://www.aiarthritis.org/aiarthritisday to sign up to get involved
19:25 - Plan a creative auto-themed outfit for the event
19:45 - Registrants will receive language they can use on social media to make raising awareness easy and hassle-free
19:54 - The online event will run from May 16th thru May 20th
20:01 - Registrants will also receive information to enable them to participate in podcast events
20:22 - Registrants may submit stories about how AiArthritis Diseases have impacted their lives, and your stories may be featured on our website
20:43 - Be a virtual table sponsor for even more perks!
21:20 - Plan something local like a parade or a driveway party
22:00 - Tiffany thanks listeners for their support
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
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