Live from APFED’s EOS Connection 2023

Real Talk: Eosinophilic Diseases

Description:

Ryan Piansky, a college student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech pathologist living with EoE who specializes in feeding therapy and serves on APFED’s Health Sciences Advisory Council recorded this episode live at APFED’s annual patient education conference in Denver, CO. They shared their experiences with this year’s conference, discussed takeaways from the conference presentations, and offered ways to continue the conversation. Recordings of the conference presentations are available to watch on-demand at apfed.org/conference through December 2023.

Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.

Key Takeaways:

[:49] Co-host Ryan Piansky welcomes co-host Holly Knotowicz. They recorded this episode at the conclusion of APFED’s Annual Patient Education Conference, held June 30 and July 1, 2023 in Denver, CO, in collaboration with Children’s Hospital Colorado.

[1:39] Also collaborating on this year’s conference was the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR). There were a lot of great sessions at the conference. Holly attended almost all the conference sessions virtually. She felt as engaged as if she were present. She loved the talks on nutrition.

[2:48] Holly loved the presentation on EGID diagnostics, both current and what’s coming down the pipeline. It had so much helpful information she can share with her patients that don’t receive care at a major hospital.

[3:14] Ryan talks about an exhibit they couldn’t show virtually: a hands on transnasal endoscopy exhibit. People got to play with the controller and practice what it is like for a doctor to do a transnasal endoscopy on a model of the nasal cavity, esophagus, and stomach. Attendees of all ages were invited to try it.

[3:38] Ryan found that he wasn’t very good at it. It takes practice! He recalls previous podcast episodes where this technology was discussed.

[4:04] Holly received lots of text messages about feeding therapy strategies and transnasal endoscopy. She received at least 13 photos from people who tried the transnasal endoscope with their children. She was jealous not to have been at the conference. Families also reached out to Holly about the string test study.

[4:58] Jane Robinson, PhD, presented ways patients can cope with and overcome some of the fears surrounding these new diagnostic methods and treatment options. A lot of kids are scared of getting shots to receive biologic treatments. She also met with an on-site teen group. Ryan loved going to APFED conferences as a teen.

[5:49] Dan Atkins, MD also did a Q&A session with the teens. Holly missed being there in person to connect with other EoE patients. The teen group at the conferences were helpful when she was growing up. The teen pictures Holly received were a riot. It looked like a good time.

[6:31] The main conference sessions were recorded and will be available on demand to view and engage with through the end of the year.

[7:11] Oral Immunotherapy (OIT) was a hot topic in the Q&As, including who could qualify for it. Ryan is excited about biologics as an option for the treatment of EoE and eosinophilic diseases. Ryan was glad the CEGIR scholars were able to present virtually at the conference.

[8:12] In 2024, APFED will host the EOS Connection conference in the Washington, DC. area. Ryan hopes to see everyone there in person or virtually.

[8:29] Throughout the year, APFED also hosts a webinar series. Recordings of past webinars are posted at apfed.org/webinars and shared on social media. They’re a great way to stay in touch with APFED and see what research is being done. Recent webinar topics include diagnostic tools and eosinophilic disorders, the microbiome and eosinophilic esophagitis, and creative cooking with eosinophilic disorders. Holly is all about the food!

[8:59] Ryan and Holly host this podcast monthly. They interview experts in all different types of eosinophilic diseases from all over the world and individuals who share their experiences with eosinophil-associated diseases.

[9:34] The last podcast episode that was released was about proton pump inhibitors (PPIs) and EoE, and was co-hosted by Holly Knotowicz and APFED’s Executive Director Mary Jo Strobel. Ryan is excited for the upcoming slate of podcasts including more patient perspectives.

[9:59] Please check out apfed.org/conferences to access all the conference sessions on demand, including presentations to help you get caught up on the latest research and wonderful patient perspectives from the conference panels both Friday and Saturday.

[10:12] Ryan thanks all of the attendees for joining, especially those who traveled to attend in person. It was wonderful to see so many people back in person. Ryan is thrilled that many were also able to access the conference remotely. You can explore the virtual conference through December 2023 at apfed.org/conference, including a virtual exhibit hall and poster hall.

[10:38] Ryan hopes to see you all at the EOS Connection 2024 conference in Washington, DC. Please stay tuned for APFED emails and updates through social media. Please tune in to the podcast and webinars. You are invited to stay connected!

[10:53] Holly thanks everyone for tuning in to this episode of Real Talk — Eosinophilic Diseases, and she hopes to see you at APFED’s webinars and podcasts!

[11:00] Special thanks to our EOS Connection 2023 collaborators and education partners CEGIR, Children’s Hospital Colorado, Sanofi, Regeneron, Abbott, AstraZeneca, Ellodi, Reckitt | Mead Johnson Nutrition, Ajinomoto Cambrooke, Bristol Myers Squibb, EnteroTrack, EvoEndo, GSK, Nutricia, Allakos, and PhRMA.

[11:34] To learn more about APFED, visit apfed.org and follow APFED on social media.

Mentioned in This Episode:

American Partnership for Eosinophilic Disorders (APFED)

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Children’s Hospital Colorado

EOS 2023 Connection Conference

CEGIR

Real Talk: Eosinophilic Diseases Podcast

APFED Videos and Webinars

Tweetables:

“We’re working with Children’s Hospital Colorado … and … we have been thrilled to have them collaborating with us [on the conference] this year.” — Ryan Piansky

“I feel like I was so connected because I have so many people there in person that were texting me and sending me pictures.” — Holly Knotowicz