Conference Day 2

March 13 - Conference Day 2

Join us today for more exciting videos, pictures, and highlights from GCOM.

Join us today as three members of The Research Team take the stage.

Busy, Busy, Busy...

Good morning Myositis family! We haven't forgotten you. The Research Team has been busy, busy, busy. We've sat in on some amazing sessions, interviewed doctors, and shot many pictures. Lynn and Benita spent an hour with Myositis Advocacy Organizations from around the world to begin a collaboration with a focus on advocacy and research. We have big plans for GCOM 2026!

Stay tuned later today for pictures, videos and updates. :)

Patient Support Organizations Patient Expert Panel

Six Myositis patients representing the US, Switzerland, the Netherlands, and Canada participated in a patient expert panel. The presentation was a huge success! Dr. Daniel Kietz from Pittsuburgh came up to Ingrid and took both of her hands and said, "thank you so much. I just realized THIS is why I am here and why I am a doctor. This is literally the 1st medical conference where I had tears in my eyes." Wow! That's making an impact! Special thanks to Manuel Lubinus for moderating the group.

Photographed left to right: Manuel Lubinus from MSU, Karen Cheng from Switzerland, Ingrid de Groot from the Netherlands, Benita Moyers from MSU, Rod Jansen from Myositis Canada, and Martha Arnold from TMA.

Manuel Lubinus

Ingrid de Groot with the Dr. Daniel Keitz

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Manuel Lubinus, Chief Science Officer and Board Member of MSU, presented the opening remarks and moderated the Patient Expert Panel. Manuel has Inclusion Body Myositis.

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Silke Schlüter from Germany was unable to be present so she sent her recorded slides and answered questions via video call.

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Karen Cheng is a member of the MSU Patient-Driven Research Team. Karen was diagnosed with Polymyositis.

Karen Cheng Presentation.pptx

Karen Cheng's recorded presentation.

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Benita Moyers is Vice President of MSU and a member of the Patient-Driven Research Team. She has MDA5 Dermatomyositis.

Benita Moyers Presentation.pptx

Benita's presentation

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Ingrid de Groot is from the Netherlands. She was diagnosed with Dermatomyositis.

Rod Presentation.pptx

Ingrid's presentation

Rod Jansen.MOV

Rod Jansen is Vice-President of Myositis Canada. He was diagnosed with Inclusion Body Myositis.

Rod Jansen Presentation.pptx

Rod 's presentation

Martha Arnold.MOV

Martha Arnold is a member of The Myositis Association Board of Directors. She was diagnosed with Inclusion Body Myositis.

Martha Arnold Presentation.pptx

Martha's Presentation

The Panel Answering Questions from the Audience

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Mighty Myositis Patients Unite

Myositis patients and advocacy groups from all over the world united today to share the patient perspective to the doctors and medical professionals in the building. We were even joined by World Traveling Wally and Teddy-Bo!

Day 2 Highlights with Manuel

Our Voices Heard Loud and Clear:
- Wow, what a moment! Five patient experts with different Myositis from different parts of the world got to share their stories and hopes directly with everyone at GCOM.
- It was emotional, with some of us sharing how we wish doctors would listen to us more. Let's keep raising our voices!
Breaking Down Barriers in Trials:
- There's a lot of research happening, but some trials have too many hoops to jump through. (e.g cancer risk, skin-only symptoms)
- It's frustrating when they don't include patients with certain symptoms or risks. We will continue to work on breaking down those barriers in EL-PFDD.
Taking ILD Seriously:
- Dr. Wilfong (Vanderbilt) gave us some eye-opening info about lung disease. Even if it seems mild, it can be serious.
- Getting early treatment is key, especially for those with specific types of myositis (MDA5, ASyS). Let's make sure the lungs get the attention they deserve! “Mild Disease still can kill you”, ILD is there but often ignored in mild cases. Being older than 60 and having oxygen below 95% are risks. MDA5-ILD is more common in Asia (50%) than in the EU and USA (~25%).
Exciting Possibilities with CAR-T Cells:
- Have you ever heard of immunotherapy? It's like giving our immune system a boost to clean the inflammatory response! CAR-T therapy is setting up your T-very own cells with a “GPS-like” radar, creating modified T cells to deal with autoimmune responses.
- We're talking about a new treatment that's been working wonders for some cancers. Now, researchers are exploring how it could help us with myositis, except for IBM (still working on that one!).