March 13 - Conference Day 1

Join us today as we officially begin the 2024 Global Conference on Myositis.

The Last of the Team is on Their Way!

Stephen and Shaylee will be joining The Research Team in a few hours. They are loaded up with video equipment so they can make videos and record interviews with doctors and participants. Be sure to stay tuned to this page. You won't want to miss the action. Make sure you submit your questions and comments below.

One....Two....THREE!!!

MSU has not one...not two...but THREE scientific abstract posters that we are presenting at GCOM! In order from left to right they are:

Anti-MDA5 Dermatomyositis Patient-Led Research Survey: Unveiling Symptoms, Treatments and Trial Attitudes -- Benita
Caregiver Burden Among Idiopathic Inflammatory Myopathy (IIM) Caregivers -- Lynn
Burden of Disease in Idiopathic Inflammatory Myopathies: First Perspectives From a Patient-Led Research Study -- Manuel

Benita, Manuel and Lynn will be presenting this posters during the Scientific Poster Session on Friday. In the meantime, they are in display in the hallway outside of the conference rooms.

Ready, Set, Go!!

Benita and Lynn are at the booth and ready to go. We had a wonderful breakfast with our Patient Organization Group which consists of Myositis organizations from all over the world. We are headed to the opening session next.

Lynn Wilson - GCOM 2024.mov

Click play for a message from

MSU President Lynn Wilson.

Benita - GCOM 2024.mov

Click play for a message from

MSU Vice President Benita Moyers.

GCOM Opening Session

MSU along with the other Patient Advocacy Organizations were recognized during the opening session.

MSU Research Team member, Karen Cheng was also recognized for her service on the GCOM Steering Committee. Way to go Karen! Thank you for all you did to help make GCOM a great event for us.

MSU Research Team member, Stephen Moore, is watching the opening session virtually on the plane. Registered guests were provided a hybrid link to watch a few of the session.

Patient Advocacy Organizations Networking Session

Patient Organizations from around the globe participating in person and via Zoom in a networking session. The agenda was discussion on a Research Agenda. By teaming up, we can have a greater voice in Myositis Research.

Coming Full Circle

Life always comes full circle. Dr. Lisa Christopher-Stine was the doctor that saved my life. When local doctors didn't know what to do, I reached out to Johns Hopkins to try to find a doctor in the south that could help. She personally emailed me back within a couple of hours from sending a list of my bloodwork and some pictures. She was so concerned about my Ferritin levels that she personally called a doctor at Vanderbilt and had me an appointment within 2 days. She continued to help me until I could visit her at Johns Hopkins a couple of months later. She was the one who directed me to Myositis Support and Understanding - MSU and encouraged me to join their support groups. She told me, "You can't manage this disease alone." And she was absolutely right. Since then, she has worked with me and with MSU on the MDA5 Survey. She is in the process of having that published in a rheumatology publication. Now three years later, I had the opportunity to thank her for all she did for me. This was a great morning! -- Benita

The Research Team

The MSU Production Crew:

Bringing the Conference to You

Shaylee and Stephen Moore, members of The Research Team, landed in Pittsburgh this morning with cameras ready. They took to the conference floors where they interviewed participants and portions of the sessions. Be sure to check back soon for the videos.

IMG_7321.MOV

Introduction Video of Shaylee from The MSU Research Team Booth.

Shaylee and Stephen caught up with Dr. Rohit Aggarwal at the Octapharma Booth. Thank you Dr. Aggarwal for sharing some insightful information with us. His video will be coming soon.

Dr. Rohit Aggarwal at the Octapharma Booth joined members of The Research Team at our booth for a group photo.

Shaylee is hard at work editing and downloading the videos to The Research Team Google Drive. I will add them for you all as soon as they are ready. We know you're going to love it.

Meet Teddy-Bo, Our Friend from the UK

We enjoyed making new friends yesterday. Benita was especially thrilled to meet Teddy-Bo. She sat down with Les and Irene Oakley from Myositis UK to interview them about the story behind Teddy-Bo. Check back here soon for the video interview to learn how Teddy-Bo came to life and is helping children understanding Myositis.

Day 1 Highlights with Manuel

The Research Team's Chief Science Officer, Manuel Lubinus shares his key takeaways from today's sessions.

Tailoring Treatments for You:
- A new report on the profiles of autoantibodies in muscle each autoantibody activates a unique set of genes or a unique "tag" response.
- In the future, we might be able to know what drug combination is the best for you might be based on your antibody.
- This approach aims to tailor treatments to individuals, acknowledging patients' unique responses to various medications based on their specific autoantibody profiles. We are not there yet, but imagine treatments as unique as you are!
- A Word of Caution on Supplements:
  - Just a heads up about herbal supplements like Spirulina.
  - They can rev up our immune systems, especially if we're dealing with Dermatomyositis.
  - Always check with your doctor even when taking Herbal supplements.
- Hopeful Updates on IBM:
  - Big news is on the horizon! Clinical trials for Sirolimus (a repurposed drug) are happening in different spots around the globe. Finding funds for generic drug clinical trials is difficult and Dr. Needham in Australia has pushed this project to get it going with full funding.
  - Plus, researchers are uncovering some new genes that are inside our muscles and may affect them. We will post some pictures of these posters and those authors soon.
  - There are still many mysteries to solve about IBM, what was first the muscle damage or immune response but new molecular tools are helping to find some answers!

We are together in our myositis journey!

More Photos from Day 1

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. :)

Bringing Research to You

Collating the Voice of people living with Autoimmune Diseases (CoVAD 3) SurveyTake this survey powered by surveymonkey.com. Create your own surveys for free.

Click to Take the Survey

The Research Team was asked by the CoVAD team to share this survey with you. Let's show them how strong the MSU community's voice can be. Take the survey and share with other myositis patients you know.

The CoVAD team comprises a group of physician-scientists undertaking a project to determine patients’ subjective well-being. By assessing these, we aim to understand your life holistically including factors influencing life satisfaction. These answers will help physicians understand the healthcare interventions needed to improve the lives of people living with chronic diseases.