MYOCONNECT Summit

MYOCONNECT Summit

Join us for the first-ever MSU Virtual Summit: Call to Action—connect, learn, and turn awareness into action for the Myositis Community.

By Myositis Support & Understanding (MSU)

Date and time

Location

Online

Lineup

Agenda

11:00 AM - 11:15 AM

Welcome Remarks: Putting Patient First in Our DNA

Jerry Williams, MSU Founder & Chief Heart Officer

Elisa Glass, Executive Director of MSU

Kick off the day with a powerful reminder: patients are the heart of everything we do. MSU Executive Director Elisa Glass and Jerry Williams will reaffirm our shared commitment to putting patient ne...

11:20 AM - 12:20 PM

The Voice of the Patient- Research Driven by Patients

Manuel Lubinus, Chief Science Officer for MSU

Shirley Schnieders, Treasurer for MSU

Rod Jansen, Vice President of Myositis Canada

Marlene Jansen, Neuro Psychologist & Care Partner

Patients are not just participants in research—they are its driving force. In this impactful session, MSU Chief Science Officer Manuel Lubinus joins advocates Shirley Schnieder, Rod Jansen, and Marle...

12:25 PM - 1:25 PM

How CAR T Cell Therapy is Changing the Nature of Research and Clinical Trials

Prateek Gandiga, M.D. FACP

Lindsay Guentzel, CART-T Myositis Patient

CAR T‑cell therapy is revolutionizing the landscape of rare disease treatment. Dr. Gandgia explores how this cutting‑edge immunotherapy is not only offering new hope for patients, but also reshaping...

1:25 PM - 2:30 PM

Refresh & Recharge Break

2:25 PM - 3:05 PM

Igniting the Fire – A New Age of Advocacy

Kyanna Williams, Director of Public Health & Policy

Corene Canaan, MPH Student Intern for MSU

Elisa Glass, Executive Director of MSU

Jessica Taylor, Dir. of Volunteer & Support Operations

A new generation of rare disease advocates is rising—and they refuse to be overlooked. In this compelling session, Kyanna Williams and MSU MPH student intern Corene Canaan, bring attention to the gr...

3:10 PM - 3:40 PM

Kourage Health Movement Class

Cooper Lee, Exercise Specialist for Kourage Health

Join us for a dynamic 30-minute exercise session led by Cooper Lee, an exercise specialist from Kourage Health, a non-profit organization dedicated to empowering individuals with serious health condi...

3:45 PM - 4:45 PM

Health Insurance 101: Denials, Appeals, and Self-Advocacy

Michelle Vogel, MPA IV Solutions Rx

Navigating the insurance system can feel overwhelming, especially when dealing with rare conditions. Health policy expert Michelle Vogel breaks down the basics of insurance denials and appeals, offer...

4:50 PM - 5:20 PM

Legislative Advocacy: Turning Stories into Policy

Kendall Rump, EveryLife Foundation for Rare Diseases

Corene Canaan, MPH Student Intern for MSU

Elisa Glass, Executive Director for MSU

Policy change starts with personal stories. In this engaging session, MSU MPH student intern Corene Canaan and Kendall Rump, a Young Adult Rare Representative at EveryLife Foundation, discuss how re...

5:25 PM - 6:05 PM

Fighting Medical Gaslighting: The Power of Being Heard

Mackenzie Abramson, MPH, BCPA Global Genes

Medical gaslighting—when symptoms are dismissed or downplayed—is a harmful reality for many rare disease patients. In this session, Mackenzie Abraham from Global Genes explores how to recognize and ...

6:05 PM - 6:15 PM

Closing Reflections

Elisa Glass, Executive Director for MSU

Jerry William, MSU Founder & Chief Heart Officer

About this event

  • Event lasts 7 hours

Hosted by Myositis Support & Understanding (MSU), MYOCONNECT Summit is a powerful, patient-led virtual experience centering the voices of people living with Myositis and their care partners. This full-day event, sponsored by Cabaletta Bio, is designed to foster education, empowerment, and authentic connection within the Myositis Community.

The summit is thoughtfully organized into two core themes:

Education-Focused

Empowerment-Focused

You’ll hear from fellow patients, caregivers, and advocates through engaging talks, honest conversations, and wellness moments—all designed with accessibility and lived experience in mind.

What to Expect:

  • Community-rooted content curated by and for the Myositis Community
  • Action-oriented tools for navigating health systems, advocacy, and wellness
  • Movement breaks with adaptive options for all bodies
  • Opportunities to reflect, connect, and take meaningful next steps

Whether you're newly diagnosed, a long-time warrior, or a dedicated care partner, A Call to Action Summit is your space to be seen, heard, and uplifted.

✨ Let’s build a stronger future—together.

Frequently asked questions

Who is hosting this event?

MYOCONNECT Summit is hosted by Myositis Support & Understanding (MSU), a patient-centered nonprofit dedicated to education, support, and advocacy for all forms of Myositis.

Is the MYOCONNECT Summit free to attend?

Yes! This is a completely free event hosted by Myositis Support & Understanding (MSU). We believe access to education, community, and empowerment should never come with a financial barrier.

Do I need to attend the entire day?

Not at all! You’re welcome to join us for the full summit or drop in and out based on your schedule and energy. Each session is designed to stand alone, so you can participate in the way that works best for you.

Who should attend?

This summit is for anyone impacted by Myositis—patients, care partners, family members, and supporters—as well as health professionals and advocates who want to learn more.

What if I miss a session?

Registrants will receive access to the the recordings from the MYOCONNECT Summit after the event, so you won’t miss out even if you can’t make it live.

Tags

Organized by

Myositis Support & Understanding (MSU)

At MSU, our commitment to Myositis patients and care partners is at the heart of everything we do. As a dedicated, patient-led non-profit, we strive to empower individuals navigating the challenges of Myositis. Our supportive programs offer not just educational resources, but also groundbreaking, patient-centered research that aims to transform lives. We are proud to provide a unique financial assistance program, ensuring that no Myositis patient is ever turned away due to lack of funds. Together, we foster a community where hope and resilience thrive. Visit us at https://understandingmyositis.org to discover more about our mission, research opportunities, or how you can make a difference.

#SupportStartsHere #MyositisAwareness #MSU

FreeAug 30 · 8:00 AM PDT