Shifting Your Mindset
2024-09-24 18:00 - 19:00 (America/New_York) | MSU Zoom Video Session, Video session using Zoom
4th Tuesday Of The Month
Starting Tuesday, September 24 & Ending March 25th, 2025
(December will be on the 17th instead of the 24th)
6 PM ET / 5 PM CT / 4 PM MT / 3 PM PT

Living Fully with Myositis: MSU’s #MyositisLife Initiative Series Presents: Our New 7-Part Series: Shifting Your Mindset!
We are excited to announce our empowering Shifting Your Mindset series, designed specifically for those living with Myositis. Over the next seven months, we will embark on a transformative journey together!
✨ Discover Your Inherent Value: Society often places expectations that can make those with chronic illnesses feel “less than.” This series encourages you to embrace your unique experience with Myositis, shifting from feelings of inadequacy to owning your worth.
Cultivate Compassion: Learn to build a more compassionate relationship with your illness, yourself, and your body. We’ll explore how to listen to what your body needs and nurture yourself through moments of uncertainty.
️ Gain Practical Tools: Move beyond fear, despair, and self-judgment. You’ll leave each session equipped with practices that guide you toward acceptance and presence, empowering you to embrace how your body shows up each day.
Format: The first half of each session will feature a recorded presentation (recorded on speaker view with profile pictures hidden to protect anonymity). The latter half will open up to discussion, providing a safe space for sharing and connection.
Join us on this journey of self-discovery and empowerment from September to March. Together, we will shift our mindsets and foster a supportive community where we can thrive! Register to Join on Zoom See Support Options See Upcoming Events

Innovative Approaches in Biopharmaceutical Research: Ensuring Patient-Centric Healthcare Solutions
2024-09-18 14:00 - 15:00 | ZOOM Webinar, 9125 N Old State Rd, Lincoln, DE, 19960, United States
In this webinar, we’ll highlight the impactful collaboration between Galapagos and MSU, focusing on our shared dedication to patient-centric healthcare. Our partnership has been vital in several initiatives, including the collection of patient voices for our ongoing Phase 2 clinical trial. At Galapagos, our research in inflammation and oncology is driven by a commitment to ensure that patient perspectives are central to our initiatives, shaping solutions that truly meet patient needs and expectations.
A significant aspect of our approach is the development of patient facing materials including informed consent documents. Zoltan Koleszar, GLPG Patient Advocacy Leader, will share his expertise on how patient recommendations are integrated into these critical documents. He will discuss how we ensure that the informed consent process is transparent, comprehensible, and respectful of patient needs, and outline how these documents are approved for use in clinical trials.
Additionally, we will feature a pre-recorded segment by Ann Fieuw, GLPG Senior Medical Director. Ann will provide valuable insights into recent trends in dermatomyositis and information on our ongoing clinical trial.
Join us for this comprehensive session to understand how Galapagos is integrating patient feedback into every stage of research, ensuring that our healthcare solutions are as effective and relevant as possible. REGISTER

Battling Brain Fog
2024-08-19 14:00 - 15:00 | MSU Zoom Video Session, Video session using Zoom
Living Fully with Myositis: MSU’s #MyositisLife Initiative Series Presents…
Battling Brain Fog
This informative session will focus on effective ways to manage cognitive fatigue and provide you with essential strategies and tools to regain control over daily responsibilities.
Discover functional supports that can help enhance your overall quality of life and empower you to navigate challenges with confidence!
Don’t miss this opportunity to learn and connect with others facing similar struggles. Your journey to clarity and productivity starts here! To register visit -️ Hosted by Speech Swallowing and Neurological Rehabilitation (SSNR), a private practice in Tyler, Texas, this webinar will be led by Meaghan Arnold, a dedicated medical speech-language pathologist and owner of SSNR. With a Bachelor of Science degree from The University of Arizona and a Master of Arts degree from The University of Texas at Austin, Meaghan brings over eight years of experience in skilled nursing facilities, home health, and outpatient settings.
-‍⚕️ Meaghan specializes in treating voice, swallowing, speech, language, cognition, and memory deficits. She’s passionate about person-centered care and community education, hosting two support groups and speaking at local events to advocate for her patients. Visit SSNR website at https://ssnrtx.com/

Fatigue Management Part 2-Practical Ways To Remove Challenges When Managing Fatigue
2024-08-05 14:00 - 15:30 | MSU Zoom Video Session, Video session using Zoom
Webinar: Fatigue Management Part 2-Practical Ways To Remove Challenges When Managing Fatigue
Monday, August 5th, on Zoom at 11 AM PT / 12 PM MT / 1 PM CT / 2 PM ET / 7 PM BST / 8 PM CEST
A Living Fully with Myositis: MSU’s #MyositisLife Initiative Series
Join us for Part 2 of our Fatigue Management Series!
Dive into practical solutions to tackle fatigue challenges with our expert speaker, Pamela Rose. Learn effective energy management techniques and discover actionable strategies to conquer fatigue.
In this engaging session, Pamela will cover:
✨ Navigating tricky conversations
✨ Responding thoughtfully rather than reacting
✨ Maintaining a vibrant social life
✨ Mindset adjustments that help you be resourceful every day
Don’t miss this chance to master the skills needed to face daily challenges and live a more energized lifestyle. Your journey to optimized energy and balance starts here! Click to Register on Zoom
About Pamela Rose

“Based in the UK, Pamela Rose is a Fatigue Coach supporting people around the world to better manage their fatigue-related challenges. She provides very real and practical guidance to her clients linked to behaviors that will start to make a noticeable difference straightaway. A key part of Pamela’s approach is ‘pacing’ or ‘energy management’ – helping clients achieve the life they have to live and want to live – whilst managing their health journeys.”
Pamela Rose Contact information info@pamelarose.co.uk or visit her website at https://www.pamelarose.co.uk/

Fatigue Management - Mastering Fatigue Pacing for a Balanced Life
2024-07-22 14:00 - 15:00 | ZOOM Webinar, 9125 N Old State Rd, Lincoln, DE, 19960, United States
Living Fully with Myositis: MSU’s #MyositisLife Initiative Series Presents – Fatigue Management – Mastering Fatigue Pacing for a Balanced Life
See the details below and register to join us on Zoom

Monday, July 22nd
2 PM ET / 1 PM CT / 12 PM MT / 11 AM PT
7:00 PM BST /8:00 PM CEST
Register to attend

Join us for an exclusive session tailored for myositis patients!
Dive into the crucial topic of fatigue management with our expert speaker, Pamela Rose. Discover the keys to effective energy management and conquer fatigue with practical strategies.
Learn the art of pacing for a balanced and fulfilling life, gaining invaluable insights to boost your well-being. Don’t miss this opportunity to master the skills needed to navigate daily challenges and embrace an energized lifestyle. Your journey to optimized energy and balance starts here!
“Based in the UK, Pamela Rose is a Fatigue Coach supporting people around the world to better manage their fatigue-related challenges. She provides very real and practical guidance to her clients linked to behaviours that will start to make a noticeable difference straightaway. A key part of Pamela’s approach is ‘pacing’ or ‘energy management’ – helping clients achieve the life they have to live and want to live – whilst managing their health journeys.”

About joining this webinar
REGISTRATION IS REQUIRED. Click the Register button above to get started. After registration, you will receive an email containing all information needed to join the webinar at the scheduled time and date.
Be sure to check your spam and junk folders if you do not see the email. 2024/05/21 19:00:00

Get Zoom We use Zoom for all webinars and our video support sessions.
Zoom is available for free and you can download and install the software on your computer or laptop, or use the free app for your smartphone and tablet.
To download the app for your smartphone or tablet, open your app store, search for Zoom, and install.

MSU on YouTube Follow us on YouTube for Live Streaming Events and over 100 videos of past webinars, and to meet our volunteers.

MSU Facebook page Be sure to visit and “Like” our public Facebook page for special events, articles, videos, and patient and caregiver opportunities. See Upcoming Events

Mindfulness Discussions with MSU
2024-06-12 13:00 - 14:00, 2024-05-08 13:00 - 14:00, 2024-04-10 13:00 - 14:00, 2024-03-13 13:00 - 14:00 | MSU Zoom Video Session, Video session using Zoom
2nd Wednesday of the month
1 PM ET / 12 PM CT / 11 AM MT / 10 AM PT

Join us for Mindfulness Discussions with MSU! Now on Zoom!
As we all know here at MSU, living with myositis isn’t easy. We understand, empathize, and relate to our journeys together and support each other the best we can.
As a part of this supportive community, we want to introduce the practice of mindfulness. Mindfulness can truly help you find balance and peace, and strengthen your connection to the self.
Angelic Ingram, Holistic Health Practioner and founder of a Mindful Journey to Freedom (expat coach) will lead discussions about mindfulness and related topics and work with the group on activities like meditation, breathwork, and others.
This session is for myositis patients and care partners. You can join to listen or to share.
This is not a support group. We keep the focus of this room on the topic of mindfulness.
Join and learn what mindfulness is and how it might help you through your journey!
Working with mindfulness is often a positive experience, however, some practices may bring up difficult emotions. As always, we encourage you to consider working together with a counselor/therapist, which has many scientifically-backed benefits. Register to Join on Zoom See Support Options See Upcoming Events

Meet Myositis Authors
2024-05-09 19:00 - 20:00 | MSU Zoom Video Session, Video session using Zoom
Meet Myositis Authors
See the details below and register to join us on Zoom

Thursday, May 9th
7 PM ET / 6 CT / 5 MT / 4 PT
Register to attend

MSU is proud to present Myositis Author’s Night. This is a series of webinars where MSU will highlight different myositis authors who are writing about their myositis journey.
Please join us on May 9th for our first session featuring the following authors.
Emily Filmore Being Sick Sucks: The Autoimmune Abyss (2023) and The Marvelous Transformation: Living Well with Autoimmune Disease (Central Recovery Press, 2015) as well as four parenting-related books.
Holly Jones co-author of ‘Awaken Your Inner Warrior” Holly also serves on the Board of Directors for The Myositis Association and is the leader of the Myositis Women of Color Affinity Group (TMA) as well as founding and running the non-profit organization HERstory In Color.
William Tillier author of “Inclusion Body Myositis; A Guide for Patients” In his book Bill combines the medical and practical aspects of living with IBM in an accessible way. It is a helpful guide for patients, their families, doctors, and caregivers.

There will be a Q&A at the end of the author’s presentation. You may submit questions upon registration or during the webinar. We look forward to seeing you there!

About joining this webinar
REGISTRATION IS REQUIRED. Click the Register button above to get started. After registration, you will receive an email containing all information needed to join the webinar at the scheduled time and date.
Be sure to check your spam and junk folders if you do not see the email. 2024/05/09 19:00:00

Get Zoom We use Zoom for all webinars and our video support sessions.
Zoom is available for free and you can download and install the software on your computer or laptop, or use the free app for your smartphone and tablet.
To download the app for your smartphone or tablet, open your app store, search for Zoom, and install.

MSU on YouTube Follow us on YouTube for Live Streaming Events and over 100 videos of past webinars, and to meet our volunteers.

MSU Facebook page Be sure to visit and “Like” our public Facebook page for special events, articles, videos, and patient and caregiver opportunities. See Upcoming Events

Community Orientation Webinar
2024-04-17 16:00 - 17:00 | MSU Zoom Video Session, Video session using Zoom
Myositis Community Orientation Webinar
Join us for a Community Orientation Webinar to learn how you can participate virtually in the first-ever Adult Dermatomyositis Patient-Focused Drug Development (EL-PFDD) meeting with the FDA.
See the full agenda below, including how you can get involved in this important endeavor.

Wednesday, April 17, 2024
4 PM ET / 3 CT / 2 MT / 1 PT
Register to attend
The agenda for this webinar:

What is patient-focused drug development?
What is the purpose of the Adult DM EL-PFDD?
What does it mean to the community?
How can you get involved?

Survey
Written testimonials
Video testimonials

About joining this webinar
REGISTRATION IS REQUIRED. Click the Register button above to get started. After registration, you will receive an email containing all information needed to join the webinar at the scheduled time and date.
Be sure to check your spam and junk folders if you do not see the email. 2024/04/17 16:00:00

Get Zoom We use Zoom for all webinars and our video support sessions.
Zoom is available for free and you can download and install the software on your computer or laptop, or use the free app for your smartphone and tablet.
To download the app for your smartphone or tablet, open your app store, search for Zoom, and install.

MSU on YouTube Follow us on YouTube for Live Streaming Events and over 100 videos of past webinars, and to meet our volunteers.

MSU Facebook page Be sure to visit and “Like” our public Facebook page for special events, articles, videos, and patient and caregiver opportunities. See Upcoming Events

5 Top Tips for Open Enrollment
2023-10-18 19:00 - 20:00 | ZOOM Webinar, 9125 N Old State Rd, Lincoln, DE, 19960, United States
Register to join MSU with Michelle Vogel on Zoom
5 Top Tips for Open Enrollment

Wednesday, October 18, 2023, at 7 PM Eastern Time
(7 PM ET / 6 CT / 5 MT / 4 PT)
Register for free Webinar Details
Are you ready for the upcoming health insurance open enrollment season?
MSU is excited to announce our upcoming webinar that aims to demystify the world of health insurance and help you make informed decisions about your coverage. With open enrollment just around the corner, it’s the perfect time to get all your questions answered and ensure you can choose the right plan for your needs.
In this informative webinar, Michelle Vogel of IV Solutions will guide you through the ins and outs of health insurance open enrollment. We’ll discuss key topics such as plan options, coverage changes, and important deadlines. Whether you’re new to the world of health insurance or a seasoned pro, this webinar will provide valuable insights to help you navigate the process with confidence.
Don’t miss out on this opportunity to gain clarity on your health insurance options and secure the coverage that suits you best. Join us on October 18th for a webinar that can significantly impact your healthcare decisions.

About joining this webinar
REGISTRATION IS REQUIRED for this free webinar. Click the Register button above to get started. After registration, you will receive an email containing all of the information you need to join the webinar on the scheduled time and date. Be sure to check your spam and junk folders if you do not see the email.

Get help using Zoom We use Zoom for all webinars and video support, activity, and education sessions.
Zoom is available for free and you can download and install the software on your computer or laptop, or visit your app store to get the app for your smartphone and tablet.See Zoom Help » See Upcoming Events 2023/10/18 19:00:00

The MINT Clinical Trial for Myositis Patients with Interstitial Lung Disease
2023-07-18 19:00 - 20:00 | MSU Zoom Video Session, Video session using Zoom
Join Dr. Rohit Aggarwal and MSU for a webinar about The MINT Clinical Trial for Myositis Patients with Interstitial Lung Disease!
Tuesday, July 18th at 7 PM ET / 6 PM CT / 5 PM MT / 4 PM PT
If you have been diagnosed with pulmonary fibrosis, also known as Interstitial Lung Disease (ILD), and you also have myositis (such as polymyositis, dermatomyositis, or anti-synthetase syndrome) or positive myositis autoantibodies, you may be eligible to take part in a research study called MINT.
The goal of this study is to gain a better understanding of how anti-fibrotic drugs can help treat myositis associated with ILD. The study will focus on the drug Nintedanib (brand name Ofev®), an oral anti-fibrotic medication approved by the Food and Drug Administration (FDA) for the treatment of various types of ILD.
The exciting part is that this clinical trial is unique because you won’t need to visit a study center. You can participate in the study from the comfort of your own home. No need to worry about traveling long distances or spending time away from your surroundings.
Is this study right for you? Join the webinar to find out and have all of your questions answered. Click to Register on Zoom

Mindfulness Discussions with MSU
2023-05-31 13:00 - 14:00 | MSU Zoom Video Session, Video session using Zoom
May 31st on Zoom
1 PM ET / 12 PM CT / 11 AM MT / 10 AM PT
Create Vision Boards

Join us for Mindfulness Discussions with MSU this time on Zoom!
As we all know here at MSU, living with myositis isn’t easy. We understand, empathize, and relate to our journeys together and support each other the best we can. In this special session, we will talk about and create vision boards.
Angelic Ingram, Holistic Health Practioner and founder of a Mindful Journey to Freedom (expat coach) will lead discussions about mindfulness and related topics and work with the group on activities like meditation, breathwork, and others.
This session is for myositis patients and care partners. You can join to listen or to share.
This is not a support group. We keep the focus of this room on the topic of mindfulness.
Join and learn what mindfulness is and how it might help you through your journey!
Working with mindfulness is often a positive experience, however, some practices may bring up difficult emotions. As always, we encourage you to consider working together with a counselor/therapist, which has many scientifically-backed benefits. Register on Zoom See Upcoming Events

The Disability Room
2023-05-23 19:00 - 20:30 | MSU Zoom Video Session, Video session using Zoom
The Disability Room

Join us on Zoom!

Join us at Myositis Support and Understanding (MSU) as we explore the life-changing question, “Am I disabled?”
There can be many mixed emotions and thoughts around our disability status. Let’s take a moment to have a conversation as we share and learn together.
We will also discuss the history of the ADA (American Disability Act) in the U.S. and share our thoughts and ideas of what this means to our personal myositis journey.

How to join
Use the button below to register to join this session.
Click to Register on Zoom See Upcoming Events

What Brings You Joy?
2023-05-09 19:00 - 20:30 | ZOOM Webinar, 9125 N Old State Rd, Lincoln, DE, 19960, United States
What Brings You Joy?
with Lisa Sniderman the author of “The Grieving Project” and Jessica Taylor, Director of Operations for MSU

Join us on Zoom!
Join us as we embark on an exploration of what joy means to you. As we navigate through our myositis journeys, it can be easy to get stuck in a mindset that can hold us back from experiencing joy in our lives. We want to open a safe space to encourage a discussion of what lights YOU up! It’s time to connect, or re-connect, with what brings you joy.

Nurturing our mental wellness is crucial to our healing process and we hope that you join us to share, learn and laugh together as we build heartfelt connections and open our hearts to more joy.

We look forward to seeing you there!

How to join
Use the button below to attend. Registration is not required; simply click the button below to join, or add this link to your calendar to join: https://us02web.zoom.us/j/87256075938
Click to join us on Zoom See Upcoming Events
