Myositis Support and Understanding

Managing Your Expectations with Exercise and Movement by Kourage Health
2025-02-24 14:00 - 15:00 (America/New_York) | MSU Zoom Video Session, Video session using Zoom
Join Kourage Health and MSU for an enlightening webinar on Monday, February 24th: “Managing Expectations with Movement & Exercise.”
Discover how to approach exercise with the right mindset. We’ll emphasize that progress isn’t an overnight fix but a journey requiring consistency and repetition.
Learn the importance of maintenance and setting realistic expectations, whether you’re a beginner, intermediate, or advanced in your exercise routine. Don’t miss this opportunity to gain valuable insights and enhance your fitness journey.
Date: February 24th, on Zoom
Time: 11 AM PT / 12 PM MT / 1 PM CT / 2 PM ET
Mark your calendar and join us, by registering below, for an inspiring session that will get you moving! See you there! Register To Attend

Shifting Your Mindset
2025-02-25 18:00 - 19:00
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

Shifting Your Mindset
2025-03-25 18:00 - 19:30
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!
This empowering Shifting Your Mindset series, designed specifically for those living with Myositis. Over the last seven months, we have embarked 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 Watch Past Episodes

Standards of Care for Home Infusion
2025-04-15 19:00 - 20:30
Date: April 15th
Time: 7 PM ET / 6 PM CT / 5 PM MT / 4 PM PT
Platform: Zoom
Hosted by: IV Solutions Rx
Join us for an informative webinar on Standards of Care for Home Infusion, designed to equip patients and caregivers with vital knowledge about home infusion therapy. This session will cover a comprehensive range of topics, including:

How to Select a Pharmacy: Learn the factors to consider when choosing a pharmacy for home infusion.
Expectations from Home Infusion Companies and Nurses: Understand what to anticipate from your infusion providers and nursing staff.
Infusion Suite vs. Home: Explore the differences between receiving treatment in an infusion suite versus at home.
Product Selection and Copay Cards: Gain insights on how to navigate product options and potential financial assistance.
Insurance Formularies: Learn about how insurance plans affect access to medications and treatments.
Accreditations & Professional Certifications: Understand the importance of choosing accredited providers for your home infusion needs.
Supplies: Discover what supplies you’ll need for effective home infusion care.
What to Expect During Your Infusion and Outcomes: Get familiar with the infusion process and the expected results.
Being an Informed Consumer: Empower yourself with knowledge to advocate for the best care.

Register To Attend
Vicky Starr, RN, IgCN

Director of Clinical Services & COO

Vicky has been a nurse for over 35 years with a focus in chronic disease states requiring infusion for the last 20 years. She is a certified IG nurse and is Director of Clinical Services and the COO of IV Solutions Rx.

Michelle Vogel, MPA
Vice President of Patient Advocacy
In 2022, Michelle joined IV Solutions RX as Vice President of Patient Advocacy to continue her outreach with patients ensuring that no patient goes without their lifesaving therapy in an affordable site of care.
Michelle has years of experience testifying before Congress, federal agencies, and state legislatures. She is also a prominent speaker on topics such as Medicare reimbursement, patient copay assistance programs, the economics of the plasma industry, health insurance reform, navigating health insurance, and patient advocacy. Michelle’s hobby is assisting patients to successfully navigate their health insurance policies to ensure that they get covered for their prescribed medications and other services.

Webinar: Automotive Mobility Solutions - Features & Benefits
2025-04-28 18:00 - 19:00
Monday, April 28th on Zoom
3 PM PT / 4 PM MT / 5 PM CT / 6 PM ET
Join us for an insightful webinar focused on exploring the diverse world of automotive mobility solutions. This session aims to educate attendees about the various types of mobility aids available, including driving aids, hand controls, scooter lifts, assist seating, and wheelchair-accessible vehicles.
What You Will Learn:
Comprehensive Overview: Understand the range of automotive mobility solutions available to enhance independence and ease of transportation.
Needs Analysis: Learn about our robust needs analysis process, designed to help individuals determine the most suitable solutions for their unique mobility requirements.
Financing Options: Explore the financing options available to make these mobility solutions accessible to a broader audience.
Speaker: Monique McGivney Monique McGivney, a seasoned expert in the mobility industry, has over 20 years of experience and a deep passion for assisting the mobility community. Based in Arizona, Monique dedicates her time to working closely with customers, helping them find optimal mobility solutions suited to their needs and budgets. She is also committed to educating both customers and allied health professionals about the wide array of mobility options available. Her extensive knowledge and dedication make her a valuable resource for anyone interested in learning more about automotive mobility solutions.
Whether you’re a potential user, caregiver, or health professional, this webinar offers valuable insights to enhance your understanding of mobility solutions and their benefits.
Don’t miss this opportunity to expand your knowledge and make informed decisions about automotive mobility solutions. Register now to secure your spot and join us for this enlightening session! Register

The Unseen Grief: Recognizing & Healing from Secondary Loss Workshop
2025-05-10 14:00 - 15:30
Saturday, May 10th
11 AM PT / 12 PM MT / 1 PM CT / 2 PM ET
Join us for an interactive workshop, “The Unseen Grief: Recognizing and Healing from Secondary Loss,” specifically designed for both individuals affected by myositis and their care partners. This collaborative session will delve into the often-overlooked aspects of grief experienced by those living with this condition, focusing on the loss of identity, capabilities, and the life one once knew.
Dr. Romano will facilitate discussions to help participants, both patients and care partners, recognize the subtle yet significant losses that accompany myositis. He will provide valuable strategies and tools to navigate the associated emotional challenges, fostering an environment of open dialogue and group exploration.
An engaging writing reflection activity will be included, encouraging attendees to share their personal experiences and insights. Participants will have the opportunity to explore their feelings, uncover paths to healing, and connect with others who share similar journeys in a supportive atmosphere.
Engage with Dr. Romano in this dynamic workshop as we collectively explore the intricate emotional landscape of secondary loss and discover pathways to healing. This is an invaluable opportunity for self-reflection, connection, and growth for both individuals affected by myositis and their care partners. Don’t miss out on this chance to participate! Register To Attend Pablo is a third-year psychiatry resident at Columbia University and will be chief resident for the 2025-2026 academic year. Prior to attending Columbia, he received a bachelor’s degree in Cognitive Science from Occidental College, completed a Fulbright fellowship in Argentina, and obtained a medical degree from Stanford University’s School of Medicine. As a medical student, he researched the impact of storytelling interventions on medical student wellness and was co-chair of the Stanford Latino Medical Student Association. As a resident, Pablo has pursued additional psychotherapy training, led medical storytelling sessions at CUMC, co-led a narrative medicine group with a focus on bereavement, and co-chaired the Wellness Committee. Aside from his clinical work, Pablo has published a number of creative pieces related to grief, immigration, and medicine; his work can be found at the Nocturnists, the Intima, and elsewhere. He plans to pursue training in palliative care and clinical ethics.

Care Partner Burnout: Supporting Your Loved One While Taking Care of Yourself
2025-05-19 13:00 - 14:30
Monday, May 19th
10 AM PT / 11 AM MT / 12 PM CT / 1 PM ET
A fatigue-related health condition doesn’t only impact the life of the person who is ill; it often brings significant changes for their loved ones and caregivers as well. Navigating this adjustment can be challenging, and it can be difficult to know how to best support your loved one while ensuring you also care for yourself.
Join us for our insightful webinar, “Care Partner Burnout,” where we will increase your understanding of what life feels like for your loved one living with fatigue-related challenges. In this session, you will learn how to effectively support them on their recovery journey while also prioritizing your own well-being.
What You Will Learn:

Insight into the experiences and emotions faced by those dealing with fatigue-related health conditions.

Effective strategies for supporting your loved one without compromising your mental and physical health.

Practical tips for managing caregiver burnout and establishing boundaries.

The importance of self-care and its role in sustaining your ability to support others.

Don’t miss this opportunity to gain valuable insights and tools to support both your loved one and yourself. Register now to secure your spot! Register To Attend “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 Website

What Brings You Joy?
2025-05-20 16:00 - 17:30
Tuesday, May 20th
4 PM ET / 3 PM CT / 2 PM MT / 1 PM PT
Join us for a heartfelt support session in celebration of Myositis Awareness Month. Hosted by acclaimed author Lisa Sniderman of The Grieving Project and Jessica Taylor, Director of Volunteer & Support Operations for MSU, this event marks the third year of this inspiring support group experience.
This year’s theme reminds us that your story matters, and that you are the hero of your own journey. During this special session, we’ll explore how joy can illuminate even the toughest moments and empower you to take control of your narrative. Through insightful conversations and interactive activities, you’ll discover ways to find happiness and hope, no matter where you are on your path.
Whether you’re seeking to reignite your sense of purpose, connect with others, or simply celebrate the small moments of joy, this supportive environment is here for you.
✨ Remember, your story matters. Be the hero of your own story — and let’s celebrate the joy that fuels your journey! ✨
#MyMyoStoryMatters #BeTheHero #JoyInEveryDay #MyositisAwareness #SupportAndHealing #CommunityEvent To Register

Myo Night: Making the Best of My Own Night
2025-05-29 19:00 - 20:00
Starting at 7 PM Eastern time
(6 PM CT, 5 PM MT, 4 PM PT)
Myositis Patients & Care Partners, click the button below to register to attend. Join us for Myo Night: Making the Best of My Own Night on May 29th at 7 PM ET, a special Zoom event to celebrate Myositis Awareness Month and our theme, “My Myo Story Matters: Be the Hero of Your Own Story.”
What to Expect:
This vibrant event invites individuals with Myositis and their loved ones to showcase their passions and talents, such as poetry, music, and arts, from the comfort of home.
Why Participate in Myo Night?
This event is all about embracing your power and celebrating the hero within you. It encourages you to make the best of your night, reinforcing the idea that despite challenges, you can create meaningful moments. Whether you’re participating solo or inviting friends and family, it’s an opportunity to share your unique story and celebrate your journey.
Join us for a vibrant evening of:
– Creative showcases
– Personal storytelling
– Celebrating resilience and talent
Let’s close out the month by highlighting the incredible ways you navigate life. Remember, your story matters, and we can’t wait to celebrate your journey. Be the hero of your own story and inspire others with your courage and creativity! To Register

Talented & Unstoppable: Navigating the Job Market with Confidence
2025-06-09 14:00 - 15:30
Monday, June 9th
11 AM PT / 12 PM MT / 1 PM CT / 2 PM ET
Are you ready to navigate the job market with confidence? Join us for “Talented & Unstoppable: Navigating the Job Market with Confidence,” a dynamic and informative webinar designed to empower job seekers and equip them with essential tools for success.
This engaging session will cover:

Welcome & Intro: Get introduced to our expert speakers and set the stage for an insightful discussion.

Navigating the Job Market: Learn how to effectively maneuver through today’s job landscape and discover strategies to identify opportunities aligned with your skills and passions.

Resume & Application Tips That Shine: Gain practical advice on how to craft standout resumes and applications that capture the attention of employers.

Mental Health & Wellbeing During the Job Search: Explore the importance of maintaining mental health and wellbeing while seeking employment and discover strategies for self-care during the process.

Know Your Rights: Accommodations & Leave Policies: Understand your rights as a job seeker, including information on accommodations and leave policies that can support you in the workplace.

Q&A & Send-Off: Participate in an interactive Q&A session where you can ask your burning questions and receive valuable insights from our experts.

Don’t miss this opportunity to enhance your job search strategies and boost your confidence in navigating the competitive job market. Register now to secure your spot! Register To Attend Alyssa Jones (She/Her) is the Founder of The People Pixie LLC, an HR Consulting business specializing in empathetic listening and innovative solutions. She is fascinated by the study of perspectives, behavior change, and letting go of ego to lead with curiosity and bravery. Alyssa invites each client to own their why, bridge understanding, and raise the workplace culture standard through collective intelligence and creativity. Her values driven mission is to support individuals on their journey to identify meaning with who they are, rather than what they do professionally. In her pursuit of making an impact to increase joy and belonging within businesses, she sprinkles a bit of pixie dust wherever she serves!

MSU MyoConnect Education & Advocacy Summit
2026-08-29 11:00 - 16:30
Saturday, August 29, 2026
11 AM ET-4:30 PM ET
Join MSU in this free community gathering to talk about the issues that mean most to myositis patients and caregivers. Led by patients, the Summit will provide you with the information and tools needed to help you navigate your journey with myositis with confidence and hope.
Living with Myositis: Real Conversations, Real Experiences
Advocacy in Action: Using Your Voice to Create Change
Research & Hope: What Patients Should Know About Emerging Therapies
Wellness Beyond the Diagnosis
Advocating for the Care You Deserve
Register Here
