2021 Charity Talk

AiArthritis Voices 360 Full Episode 61

Air Date: May 2, 2021

This week join your patient co-hosts Tiffany Westrich-Robertson and Deb Constein as they discuss AiArthritis’ 2021 Annual Fundraising Effort:  The AUTO Drive Charity TALK. Since many of the members of the AiArthritis community are unable to walk long distances, AiArthritis decided to host a Charity Talk in lieu of the traditional Charity Walk. The purpose is to raise awareness, educate the public about our diseases, improve communication between patients and their loved ones, and raise money to support the ongoing work our organization does to serve the 450 million people worldwide living with AiArthritis diseases.


Would you like to get involved? You can download free materials to host your own Charity Talk to educate your friends and family about the nature of your disease. Tune in to this special mini episode to find out all the details and get started - and also visit the official Charity Talk page!


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!)

You can find, follow, and listen on Podbean, Spotify, Apple Podcast, or where ever you do podcasts. Please follow, rate, and subscribe to the show, then share it with someone. Be sure to check out our top-rated show on  Feedspot!

Today's episode was live-streamed on Youtube. Click the button below to watch the playlist and learn more about the AUTO Drive Charity TALK.

Click HERE to watch the playlist and add your thoughts in the comments!

CHARITY TALK PAGE:

Click here to learn more!

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


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?

Tiffany Westrich-Robertson

Show Notes:

  • 00:52 - Tiffany welcomes listeners.
  • 01:13 - Tiffany is joined by fellow patient co-host, Deb
  • 02:15 - On May 1st, AiArthritis hosted a virtual Charity Talk (an alternative to a traditional Charity Walk).
  • 05:28 - A primary focus of the Charity Talks is to create educational materials to communicate to the public that AiArthritis diseases are systemic, full body diseases. They are not “just” arthritis.
  • 06:23 - All of the materials from the event are available for anyone to use to organize their own event to educate friends and family.
  • 09:13 - Lack of understanding or mistaken assumptions about physical abilities can create conflicts between AiArthritis patients and their families or friends.
  • 10:18 - Delayed diagnosis leads to delayed treatment and irreversible damage so educating the public can also help people with symptoms get a diagnosis sooner.
  • 14:03 - The Charity Talk materials also cover the idea of “Who Am I Now?” and how the roles of an AiArthritis patient may have to change after diagnosis
  • 16:21 - Visit aiarthritis.org/charitytalk to download all of the free materials to host your own Charity Talk, especially in the month of May in support of World Autoimmune and Autoinflammatory Arthritis Day (May 20th)
  • 17:00 - Donations are also accepted on the same webpage to support all the work AiArthritis does to help patients living with AiArthritis Diseases worldwide.
  • 17:44 - Tiffany thanks listeners for their continued support.

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.


Deb Constien
Deb has been living with Rheumatoid Arthritis for three decades and while she has experienced disability from it, she never lets her disease dominate how powerful her voice can be. 

She has been a key Representative (high level volunteer) for our organization for several years and often takes a leadership role in many programs and mission initiatives, including attending meetings as the voice of the organization. She is also a Platinum Ambassador at the Arthritis Foundation, as well as various other nonprofits, and has formerly and currently used her voice as a Patient Research Partner (Wisconsin Research and Education Network (WREN), OMERACT, Arthritis Power through CreakyJoints and more). She has represented her state of Wisconsin on Capitol Hill and at a local multiples times, and most recently was a key player in helping to pass step therapy legislation in her state.

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