Conference Day 3

March 15 - Conference Day 3

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

Patient Advocacy Organizations Meeting Day 3

Patient Organizations from around the globe have been participating in daily meetings in concurrence with the GCOM conference. We met in person and via Zoom. Today's discussion was centered around plans for World Myositis Day. This was an exciting and meaningful meeting. We will be sharing more information in upcoming months.

Patient Advocacy Organizations at GCOM 2024:

Patient-Centered Research Collaborations

ynn Wilson (MSU), Ingrid De Groot (Dutch Myositis Working Group) Jim Minnow (Cure JM), Irene Oakley (Myositis UK) presented highlights from the Patient Advocacy Organizations meetings at GCOM 2024. Members from PAOs from all over the world discussed ideas for patient-centered research collaborations.

1545pm USE THIS_FINAL_Day 3 Potpourri PAO research collaborations copy.pptx

Welcome Myositis India

Today, we had the opportunity to meet a new myosits group from India. It has been wonderful to make new friends and strengthen the bond within the myositis family.

Karen meets Dr. Daniel Kietz

Daniel Kietz was originally from Frankfurt. He is currently working at the University of Pittsburgh Hospital. He is a pediatric and adult rheumatologist. He was so inspired by the Patient Panel yesterday that he said he will be making sure that he has a patient/caregiver in the presentations at the Family Day he is organizing at UPitts hospital where he works. This was his first GCOM and he is very thankful he is here and doing what he is doing.

The Research Team Goes Live

Live from GCOM.mp4

Day 3 Highlights with Manuel

Friday afternoon, Benita contacted Jason and he arranged an impromptu Zoom call in our Myositis Support Facebook group. The team was excited to share a glimpse into the conference. Click the play button to watch the replay.

1. Myositis: More Than Just Muscles!

· Today's session showed us that myositis can affect more than just our muscles (who would have thought it?), and all the other manifestations are very important to treat.

· Skin issues? Dr. Michelle Min shared some relevant info about add-on therapy with topical JAK-inhibitor cream that might help, along with a tip about tinted sunscreen for extra protection from visible light.

· Trouble swallowing? Kendrea Garand reminded us that it's a common issue, especially for those with IBM. We saw Rhonda Rogers (IBM, San Diego) on the big screen talking about how affects IBMers. No big breakthroughs yet, but it's important to get checked individually before trying any surgery.

2. Predicting Lung Issues:

· Dr. Cheilonda Johnson talked about predicting lung problems, like ILD, better.

· She's using parameters like biomarkers/lab lung tests and different scores (age, sex, gender, MDA5, and others) to figure out who might be at greater risk. Knowledge is power, right?

3. The Mystery of Missing Autoantibodies:

· Ever wonder why some folks don't show certain autoantibodies? Turns out, we might just not know what they are yet!

· We're discovering new ones all the time, like this latest one called Anti-Ly (ASyS). Science is always surprising us!

4. Shoutout to Patient Organizations:

· Big props to the presidents of Myositis Organizations! They're working hard to fund research and collaborate with others.

· Our own Lynn Wilson is doing awesome work, along with others, to keep us connected and supported.

Don't forget to catch our interview with Dr. Didem Saygin. She's chatting about the challenges our community faces with clinical trials. Lots of important stuff to learn!

Benita and Teddy-Bo's Adventures

Benita and Teddy-Bo from the UK have had great adventures this week.

These are just a few of his exciting moments.

Benita met Teddy-Bo and Les and Irene Oakley from Myositis UK. Benita fell in love with Teddy-Bo at first sight.

Stephen and Shaylee joined Benita at the Myositis UK book and interviewed them. Their video will be posted soon .

Teddy-Bo was tired but he wanted to attend the Patient Advocacy Organizations meeting. He got comfy in Benita's person and listened intently to all the wonderful collaboration.