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Watch The Power of Connecting Young Adults

The Power of Connecting Young Adults

Young adults living with rare diseases have many unmet needs and many life decisions that can be impacted by their illness.

In this webinar, Seth Rotberg and Morgan Gleason share their experiences as young adults advocating with and empowering young adults. Co-Founder and Board President Seth Rotberg, who is a carrier for a rare, genetic disease known as Huntington’s Disease (HD), which took his mother’s life, will talk about how Our Odyssey is working to empower young adults to take control of their lives by building social and emotional connects and providing the resources to enable them to thrive.

Morgan Gleason has had juvenile dermatomyositis since age 11. She recently graduated from college and she will share her story of growing up with juvenile dermatomyositis and about getting involved in the myositis community and improving the patient experience.

Download the Slides

View the slides to follow along and to access the resources provided during the webinar.

College Accommodations

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About Seth Rotberg

Seth Rotberg is a patient advocate and motivational speakerSeth Rotberg is a patient advocate and motivational speaker who is passionate about bringing his personal experience to better support the health community. He has over 11 years of fundraising, advocacy, and volunteer experience within the health space. His passion is driven by his mother’s 17-year battle with the rare, genetic disease known as Huntington’s Disease (HD). In 2019 he co-founded the nonprofit, Our Odyssey, to connect young adults in the rare and chronic communities with social and emotional support. Seth has a Master’s in Nonprofit Management from DePaul University and currently resides in Boston, MA.

About Morgan Gleason

Morgan Gleason is a patient advocate who is passionate about improving the patient experienceMorgan Gleason is a patient advocate who is passionate about improving the patient experience, helping patients have access to their medical records, enabling patients to make care decisions based on cost and quality data. After being diagnosed with a rare autoimmune disease called juvenile dermatomyositis at age 11, Gleason began making YouTube videos that went viral. She now advocates for patients across the country and shares her journey by speaking at conferences and writing a blog. She recently graduated from Auburn University and is looking for opportunities to improve the patient experience.

About Our Odyssey

Our Odyssey logo

Our Odyssey is working to empower young adults to take control of their lives by building social and emotional connects and providing the resources to enable them to thrive. Visit Our Odyssey at https://ourodyssey.org/.

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Myositis Support and Understanding Association (MSU) is a patient-centered, all-volunteer 501(c)(3) nonprofit organization Empowering the Myositis Community. Founded by Myositis patients, for Myositis patients, MSU provides education, support, advocacy, access to research and clinical trial matching, and need-based financial assistance.

View more information: Myositis Support

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