MYOCONNECT Summit – A Call to Action
We are excited to invite you to register now for the MYOCONNECT Virtual Summit, hosted by Myositis Support and Understanding (MSU). This landmark event marks the launch of the MYOCONNECT Education and Empowerment Forum, a new platform dedicated to putting patients’ voices first through trusted, patient-focused education and powerful resources.
Summit Date: August 30th | 11 AM – 6 PM EST
This year’s theme is “A Call to Action” — because after 10 years of supporting the Myositis community, this community is DONE waiting. It is time to move beyond patience and start creating waves of change together. Whether you are a patient, caregiver, medical professional, or advocate, this summit will equip you with the knowledge, tools, and inspiration to make your voice heard and spark real progress.
Join us for engaging sessions, inspiring speakers, and meaningful conversations that empower every member of the Myositis community
Register today to secure your spot: MYOCONNECT Summit
Be part of this historic moment — let us take action, together!
MYOCONNECT: Education & Empowerment Summit
Theme: A Call to Action
Date: Saturday, August 30, 2025
Location: Virtual via Zoom
Time: 11:00 AM – 6:10 PM
Agenda
Welcome Remarks: Putting Patients First in Our DNA
- Time: 11:00 – 11:15 AM
- Speakers: Elisa Glass, Jerry Williams
- Description: Kick off the day with a reminder that patients are at the heart of our mission. Commit to a “patient-first” ethos.
The Voice of the Patient- Research Driven by Patients
- Time: 11:20 AM – 12:20 PM
- Speakers: Manuel Lubinus, Shirley, Rod, Marlene Jansen
- Description: Discover how patient experiences shape care. Key insights from the Pain and Burden of Care Papers.
How CAR T‑Cell Therapy is Changing Research and Clinical Trials
- Time: 12:25 – 1:25 PM
- Speaker: Dr. Gandgia
- Description: Explore how CAR T-cell therapy is revolutionizing rare disease treatment and clinical trials.
Midday Refresh & Recharge
- Time: 1:25 – 2:25 PM
Igniting the Fire – A New Age of Advocacy
- Time: 2:25 – 3:05 PM
- Speakers: Kyanna Williams, Corene Canaan
- Description: Young adults demand visibility and action. Learn how they are transforming rare disease advocacy.
Kourage Health Movement Class
- Time: 3:10 – 3:40 PM
- Instructor: Cooper Lee
- Description: 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 conditions.
Health Insurance 101: Denials, Appeals, and Self-Advocacy
- Time: 3:45 – 4:45 PM
- Speaker: Michelle Vogel
- Description: Navigate insurance challenges with expert tips on turning denials into approvals.
Legislative Advocacy: Turning Stories into Policy
- Time: 4:50 – 5:20 PM
- Speakers: Corene Canaan, Kendall Rump, Elisa Glass
- Description: Transform personal stories into legislative change.
Fighting Medical Gaslighting: The Power of Being Heard
- Time: 5:25 – 6:05 PM
- Speaker: Mackenzie Abraham
- Description: Empower yourself to overcome medical dismissal and advocate confidently.
Closing Reflections: We Are the Change
- Time: 6:05 – 6:10 PM
- Speakers: Elisa Glass, Jerry Williams
- Description: Reflect on our progress and commit to continued change for the rare disease community.
Join us for a day of learning, empowerment, and advocacy!
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.
