Charla benéfica de 2021
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!
¡ESCUCHA EL EPISODIO Y LUEGO ÚNETE A LA CONVERSACIÓN!
(¡Desplázate hacia abajo para saber cómo!)
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.
CHARITY TALK PAGE:
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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)
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The
AiArthritis Voices Program
Nuestro AiEl programa de entrevistas Arthritis Voices 360 es solo una parte de un programa más amplio: AiPrograma Voces de la Artritis.
AiArthritis Voices es nuestro programa dondepersonas que viven con AiEnfermedades artríticas y otras partes interesadasQuienes necesitamos "en la mesa de negociaciones" para resolver los problemas que afectan a la educación, la defensa de los derechos y la investigación, se inscriben para tener voz en nuestras iniciativas.
Si desea participar más y ver más oportunidades que tenemos para usted (y para todas las partes interesadas), consulte la
AiPrograma Voces de la Artritis. Únete a personas de todo el mundo para hablar, aprender y conectar.
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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Sus coanfitriones e invitados: ¿Quiénes están en la mesa en este episodio?
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.
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