Changing the World from Your Sofa!
AiArthritis Voices 360 Full Episode 69
Air Date: January 2, 2022
In this episode, Tiffany Westrich-Robertson and Katie Simons talk about the heart and soul of our organization - the volunteers! Meet five volunteers from around the world - Deb, Katie, and Leslie from the United States, Pooja from India, and Judy from Australia - hear from them just how much they've accomplished by joining our team and the impact they've helped us achieve! Learn more about many of our programs and ways YOU can get involved in 2022! Patient voices and all other stakeholders welcome.
Learn more about the following programs mentioned in the episode:
- AiArthritis Voices
- AiArthritis Voices 360 Talk Show
- RheumyRounds
- A Community Team (ACT) - first immunology Innovation in Research winner, Celgene 2015
- A Community Team (ACT) II - utilizing data from atypical patients to justify when it's time to ensure treatment decisions are made by their doctors, who are ethically obligated to treat to the individual needs of patients.
- World AiArthritis Day
- Still's Disease Awareness Day
- Preparing Patients for Precision Medicine
- COVID-19 - Actemra Shortage
- COVID19- Shared Decision Making
- Go with Us to Conferences
- NEW IN 2022 - Advocacy/Public Policy Creative Patient-Led Learning!
Sign Up to Volunteer!
LISTEN TO THE EPISODE THEN BE SURE TO TAKE A SEAT AT THE TABLE BY JOINING THE CONVERSATION!
(Scroll down the page to learn how!)
Show Notes:
Episode 69: Changing the World From Your Sofa
00:52 - Tiffany welcomes listeners.
01:04 - Tiffany is the CEO of AiArthritis and a patient living with non-radiographic axial spondyloarthritis.
1:11 - Tiffany is joined today by Katie, the Senior Programs Communications Manager at AiArthritis and a patient living with rheumatoid arthritis.
5:50 - Tiffany shares the origin story of AiArthritis as an organization.
14:20 - Tiffany and Katie discuss the role of volunteers in the AiArthritis organization.
16:41 - Judy - a volunteer from Australia - gives her volunteer testimony.
19:43 - AiArthritis strives to provide accurate information and a community space for aiarthritis patients.
22:42 - AiArthritis has developed a free online platform called AiArthritis Voices for all stakeholders to connect and find volunteer opportunities.
25:15 - AiArthritis provides information to patients about new treatment options.
25:49 - Deb Constein - a volunteer from Madison, WI and recurring co-host - gives her volunteer testimony.
32:17 - If we are working on something, volunteers have the opportunity to work on it!
35:49 - Patrice - a volunteer from California and recurring cohost - gives her volunteer testimony.
36:33 - Patrice is a great example of how many initiatives you can be involved in even as a new volunteer.
41:59 - Leslie - a volunteer from Michigan - gives her volunteer testimony.
45:38 - Pooja - a volunteer from India and recurring co-host - gives her volunteer testimony.
54:16 - If you are interested in advocacy, visit aiarthritis.org/advocacy
54:24 - Or visit aiarthritis.org/volunteer to learn about many opportunities for getting involved!
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.
Your Co-Hosts & Guests: Who is at the table this episode?
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.
Katie Simons
Diagnosed with Juvenile Rheumatoid Arthritis (now called Juvenile Idiopathic Arthritis) at age 12 and recently found a new home at
AiArthritis as Senior Program & Communications Manager. She earned a Masters of Public Administration, nonprofit management concentration, from Oakland University in Rochester, Michigan.
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