COVID-19 & AiArthritis

Special AUTO Ball Series

AiArthritis Voices 360 Full Episode #29

AUTO Ball Special Series Episode #2

Air Date: May 27, 2020

This episode was recorded LIVE in conjunction with our first annual AUTO Ball, a gala aimed to introduce our organization to a broader pool of people and raise funds to support our efforts into 2021. The podcast version (audio) below is edited by production. If you would prefer to watch the live (video), it is available too. NOTE: There was technology issues during this session so the video version has several interruptions. 


In this episode, we revisit our work to help those affected by Ai Arthritis navigate the landscape of COVID-19 by bringing back show Co-Host, Danielle - International Foundation for Ai Arthritis volunteer, former educator (teaching geography, including pandemics), and person living with Ai Arthritis diseases. In this episode, Tiffany and Danielle discuss the current spread of the virus and Danielle explains the concept of epidemiological models and flattening the curve. They discuss the efforts to reopen some areas that had been previously locked down, as well as how you can protect yourself from infection if you live in one of those newly opened places. Tiffany discusses the ongoing frustration with testing availability and how much we still don’t know about the impact the virus has on survivors. 


Note: We also give a shout out to our Producers, Bill Dass and Ryan Reeves, shown in the photo above. 


LISTEN TO THE FULL, PRODUCED EPISODE THEN BE SURE TO TAKE A SEAT AT THE TABLE BY JOINING THE CONVERSATION! 
(See table icon below)

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Watch the raw footage from the AUTO Ball.
Then pull up a seat and watch the episode from our Youtube page. NOTE - this is raw footage, including some power outages: 

WATCH NOW: Live Episode from our Youtube Page

Pull up your seat at the table

Now it's YOUR TURN to join the conversation!

What do you think about this episode?

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)

Continue the conversation in our own AiArthritis Voices 360 Talk Show Group!

Pull up a seat and join the conversation on the topic from today and past episodes. You may even get an opportunity to talk directly with the co-hosts and any episode guests!

The AiArthritis Voices Program

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. 

Join AiArthritis Voices

Show Notes: Episode 29 - AUTO Ball LIVE: Revisiting our work with COVID-19 & AiArthritis


0:33 - Tiffany welcomes listeners to today’s episode

1:36 - Today’s episode was recorded LIVE during the AUTO Ball Online event on COVID-19 and the AiArthritis Community

3:52 - Today Tiffany is joined by fellow patient co-host Danielle, a retired educator with experience teaching about pandemics and epidemics

7:13 - Danielle has also co-hosted COVID-19 episodes about flattening the curve, wearing masks, and a mini-sode about wearing gloves

7:30 - Visit aiarthritis.org/COVID19 to access any of the 10 episodes of AiArthritis Voices 360 on the pandemic

10:20 - A pandemic is any disease that has a wide spread of cases across the globe with no single epicenter

11:43 - COVID-19 has a higher mortality rate than other common viruses

11:49 - COVID-19 is unique among viruses because it is dangerous to healthy adults without underlying conditions as well as the traditionally at-risk populations

12:53 - The United States currently has more cases of COVID-19 than any other country, even when accounting for population and physical size

13:50 - India stands out globally for being successful with containment of the virus

14:20 - India’s aggressive lockdown strategy raises concerns about the economic impacts that could result, especially how the poor could be affected

15:17 - Danielle explains epidemiological graphs and the concept of “flattening the curve”

17:22 - The unfortunate side-effect of flattening the curve is it tends to slow the progression of the virus so the pandemic lasts longer

18:22 - Many people underestimated the challenge of staying home and being socially isolated

19:53 - As areas begin to reopen, people must be flexible and responsive to the needs of the medical community in terms of keeping the influx of new patients at a manageable level

20:39 - People must trust their local medical professionals’ assessments of their capacity to care for the infected

21:06 - Carrie Beach from Rheumatology Nurses Society will be a special guest on a future episode of AiArthritis Voices 360 to discuss the pandemic from the perspective of medical professionals

21:44 - AiArthritis patients are accustomed to social distancing and can provide guidance to others coping with social isolation for the first time

23:30 - The mortality rate has been lower than originally feared because efforts to flatten the curve have been successful 

24:34 - The lack of availability of COVID-19 tests in the United States has been particularly frustrating for patients

25:09 - COVID-19 was originally believed to be a respiratory disease, but we now know that it can impact many other organ systems

27:00 - AiArthritis patients who know they had or believe they had COVID-19 should consider getting involved in the research efforts currently underway

27:53 - If you are living in an area that is beginning to reopen, please continue taking all safety precautions to avoid contagion. Just because an area is reopening for economic reasons does not mean that you are safe from the virus.

29:09 - Many people are only focusing on the death toll, but we have no idea how survivors will be impacted longterm from the virus

29:53 - To learn more about COVID-19, visit our AiArthritis COVID-19 Facebook group (COVID-19 & AiArthritis) or our website @ aiarthritis.org/podcast

32:28 - To learn how you can get involved in COVID-19 and AiArthritis clinical research, visit AiArthritis.org/covid19 

34:50 - Please consider making a donation of any amount to support our ongoing work on COVID-19 or any of our projects

35:34 - Visit our Facebook page @IFAiArthritis to see all of the videos from the AUTO Ball Online


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.


JOIN TODAY! 

 

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).

Be sure to check out our top-rated show on  Feedspot!


Your Co-Hosts & Guests: Who is at the table this episode?

Show Co-Host: Tiffany Westrich-Robertson

Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues. For the last several years, she has continued her education in research, including becoming a professional focus group moderator, and translated this experience at our organization to develop award-winning, innovative projects that are taking patient engagement to next levels. 

Tiffany has served on several advisory boards, including those to advance patient voices in policy, clinical trials, and precision medicine. In addition to reviewing grants at PCORI and for the Department of Defense, she was the sole patient grant reviewer for the National Institute of Arthritis and Musculoskeletal and Skin diseases from 2015-2018. She currently participates as a Patient Research Partner for OMERACT (Outcome Measures in Rheumatology), co-leads our organizations' international effort to advance patient voices in rheumatology research (the ACTion Council) and has dedicated her professional career to developing other patients to utilize their voices to impact the future of millions.

Show Co-Host: Danielle Dass
Danielle Dass is a career educator, wife, and mother of 3. She was diagnosed with Rheumatoid Arthritis and Primary Biliary Cholangitis after years of unproductive medical investigation. She is dedicated to educating fellow AiArthritis patients about the importance of liver health and metabolic testing. In her spare time, she also co-hosts a podcast with her husband and 10 year old daughter about the importance of film history for the next generation.
 
Listen to Danielle's Podcast: https://bacea.podbean.com/

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