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
IMG_7398.MOVManuel Lubinus, Chief Science Officer and Board Member of MSU, presented the opening remarks and moderated the Patient Expert Panel. Manuel has Inclusion Body Myositis.
Silke Presentation.pptxSilke Schlüter from Germany was unable to be present so she sent her recorded slides and answered questions via video call.
IMG_7401.MOVKaren Cheng is a member of the MSU Patient-Driven Research Team. Karen was diagnosed with Polymyositis.
Karen Cheng Presentation.pptxKaren Cheng's recorded presentation.
Benita part 1.MOVBenita Moyers is Vice President of MSU and a member of the Patient-Driven Research Team. She has MDA5 Dermatomyositis.
Benita Moyers Presentation.pptxBenita's presentation
Ingrid presentation.MOVIngrid de Groot is from the Netherlands. She was diagnosed with Dermatomyositis.
Rod Presentation.pptxIngrid's presentation
Rod Jansen.MOVRod Jansen is Vice-President of Myositis Canada. He was diagnosed with Inclusion Body Myositis.
Rod Jansen Presentation.pptxRod 's presentation
Martha Arnold.MOVMartha Arnold is a member of The Myositis Association Board of Directors. She was diagnosed with Inclusion Body Myositis.
Martha Arnold Presentation.pptxMartha's Presentation
The Panel Answering Questions from the Audience
IMG_7408.MOVIMG_7409.MOVIMG_7405.MOVIMG_7410.MOVIMG_7411.MOVIMG_7412.MOVMighty 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!).
Don't forget to catch our interview with Merrilee Needham about the Sirolimus trial for IBM. Lots of hope and promise ahead!
A Night at the Phipps
More Pictures from Day 2 of GCOM
Patients and Medical professionals were given the opportunity to socialize and get to know each other better during a reception at the Phipps Conservatory and Botanical Gardens. Listen to Stephen as he talks to the Dutch Myositis Working Group about their experiences at GCOM 2024.
Click on the arrows to view all of the photos. We will be adding more as soon as Shelby and Stephen can get them downloaded from the cameras and Benita can get them uploaded to the site. :)
Chat With Us!
Don't forget to join us by leaving your comments and questions. We are looking forward to hearing from you!
