How Patient Stories Change Perspectives and Influence Lawmakers
About IBD24 Syys 2025

How Patient Stories Change Perspectives and Influence Lawmakers

Every person living with inflammatory bowel disease (IBD) can help change public policy by sharing their story and participating in advocacy events, such as visiting legislators in Washington, D.C. Amber talks to Kelly E. Dwyer, who teaches us how to prepare an elevator speech and gives us practical tips for Hill Day logistics, working within teams, staying emotionally resilient, and following up with staffers. Advocacy is for everyone, and persistence and collaboration can lead to real policy changes to benefit the IBD and chronic illness communities. By the end of the episode, you'll have the real resources you can use to do this work as a patient advocate both locally and nationally. This episode is sponsored by Connecting to Cure. Transcript and more information: https://bit.ly/AIBD186 Chapters:
  • 00:05 Introduction and Guest Background
  • 01:23 The Role and Nature of Patient Advocacy
  • 02:37 The Long Game of Advocacy: Successes and Challenges
  • 04:37 Advocacy vs. Activism and Personal Motivation
  • 06:05 The Importance of Patient Stories in Advocacy
  • 06:52 Crafting and Delivering Your Elevator Speech
  • 11:46 Managing Emotions and Practicing Your Story
  • 15:42 Preparing for Advocacy Day: Research and Teamwork
  • 18:07 Training and Building Confidence for Hill Visits
  • 20:58 Coordinating with Your Advocacy Team
  • 22:38 Practical Logistics: What to Wear and Security
  • 24:42 Navigating Capitol Hill: Accessibility and Facilities
  • 29:26 Managing the Day: Scheduling and Flexibility
  • 32:17 During the Meeting: Structure and Communication
  • 36:04 Group Dynamics and Respectful Storytelling
  • 40:29 Building Relationships and Following Up
  • 42:12 How to Get Involved with Advocacy Groups
  • 44:42 Financial Considerations and Accessibility
  • 45:17 Encouragement and Closing Thoughts on Advocacy
  • 47:12 Lessons Learned the Hard Way
  • 50:33 Closing Remarks and Gratitude
  • 51:22 Outro and Credits
Topics on this episode:
  • Overview of inflammatory bowel disease (IBD), including Crohn's disease and ulcerative colitis.
  • Personal experiences of living with IBD and the impact on daily life.
  • The role of patient advocacy in improving healthcare policies and patient rights.
  • Challenges faced by patients regarding insurance barriers and treatment access.
  • Importance of sharing personal stories with legislators to influence policy change.
  • Distinction between activism and advocacy in the context of healthcare.
  • Strategies for effective communication and preparation for advocacy efforts.
  • The significance of teamwork and collaboration in advocacy initiatives.
  • Resources and organizations that support IBD advocacy and patient education.
  • Emotional aspects of sharing health experiences and the importance of building relationships with legislative staff.
Find Kelly E. Dwyer at: Find Amber J Tresca at: Find Mac Cooney (mix, sound design, and theme music) at: These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

Jaksot(200)

Navigating Hernia Surgery Featuring Mike Tresca

Navigating Hernia Surgery Featuring Mike Tresca

Amber is joined by her husband, Mike, who recently underwent robotic hernia surgery. In this candid conversation, they explore the entire experience—from the initial discovery of the hernia to the sur...

7 Tammi 20251h 22min

Amber's 2024 in Books

Amber's 2024 in Books

Amber shares some of the books she read over the previous year including biographies, young adult fiction, bestsellers, and romance. Hear about Amber's reading list from 2024, which was truly a mixed ...

22 Joulu 202424min

"Fine" Dining With Crohn's Disease Featuring Michael Ornelas

"Fine" Dining With Crohn's Disease Featuring Michael Ornelas

What's the difference between ulcerative colitis and Crohn's disease? We talk about them like they're two distinct sides of a spectrum, but there are people who don't have a firm place on that continu...

10 Joulu 20241h 2min

"3 Kidneys, No Colon" With Dave Piontkowski

"3 Kidneys, No Colon" With Dave Piontkowski

For people living with inflammatory bowel disease (IBD), the path to pursuing our dreams can look different from that of our peers. Stand-up comedian Dave Piontkowski, lives with not only ulcerative c...

26 Marras 202440min

The Hosts of Bowel Moments

The Hosts of Bowel Moments

Alicia and Robin, co-hosts of the "Bowel Moments" podcast, join Amber for a discussion about podcasting in the IBD community. Robin shares her IBD journey, including her diagnosis of ulcerative coliti...

12 Marras 202436min

Finding the Balance - Honoring Veteran's Day With Stephanie Gish

Finding the Balance - Honoring Veteran's Day With Stephanie Gish

Stephanie Gish, host of the Crohn's Fitness Food podcast, gives the details of her journey with Crohn's disease and IGA nephropathy. Stephanie's Crohn's symptoms began in 2003, but she was initially m...

29 Loka 202459min

Parenting With IBD (With Alison McGauley)

Parenting With IBD (With Alison McGauley)

Amber interviews Alison McGauley, a teacher and author of "Kenzie's Little Tree," a children's book about a girl whose mother lives with chronic illness. Alison shares her journey with ulcerative coli...

15 Loka 202434min

Choosing Ostomy Surgery With Hannah Martin-Spencer

Choosing Ostomy Surgery With Hannah Martin-Spencer

Is it surprising to learn that some people living with IBD choose to have ostomy surgery? Hannah, a 24-year-old woman, shares her journey through the initial symptoms of IBD at the age of 15, to getti...

1 Loka 202458min

Suosittua kategoriassa Terveys ja hyvinvointi

unicast
voi-hyvin-meditaatiot-2
psykopodiaa-podcast
rss-pitaisko-erota
rss-hanna-tikander
rss-narsisti
tiedenaiset-podcast
terapiassa
vakeva-elama-viisaampi-mieli-vahvempi-keho
puhu-muru
meditaatiot-suomeksi
junnut-pelissa
rss-kuumilla-aalloilla
selviytyjat-tarinoita-elamasta
rss-pt-paahtio
aamukahvilla
paaasia-podcast
katilon-kahvitunti
rss-duodecim-lehti
rss-kyykkya-ja-kuoharia