How Myositis Support and Understanding Association Adapts and Stays Nimble

The Myositis Support and Understanding Association evolved from a Facebook support group formed in 2010, to an all-volunteer, nonprofit organization empowering and supporting patients and caregivers across the country.

Jerry Williams created the organization, known as MSU, to ensure that patients and families dealing with inflammatory myopathies or myositis are never alone in their rare disease journey.

MSU hosted their inaugural MSU Empower Walk and Fundraiser in 2019, in memory of Robert Landman, a myositis patient. Lynn Wilson recalls that one of their support group members saw the event on social media and traveled from out of state to meet her and support Robert’s family.

“I was so honored and it was a very emotional time full of lots of hugs and tears. No one is alone in this journey with a rare disease and our ability to connect with people on a personal level is what makes us at MSU who we are,” Lynn said.

Adapting to patient needs during COVID-19

Both Jerry and Lynn admit that leading a nonprofit organization can be stressful. Due to the current COVID-19 pandemic, they had to quickly adapt their plans while providing education, awareness, resources and support to their community. MSU increased the frequency of their patient video support sessions, shifted focus to COVID-19 topics, and created sessions on how to stay safe and deal with social isolation.

May is Myositis Awareness Month – normally a time when MSU raises awareness and fundraises so that they can continue providing financial assistance to their rare disease community.

For 2020, instead of fundraising, Lynn and Jerry are holding an MSU Anti-Fundraiser. They are hoping to bring excitement and joy to their members by giving out electronic gift cards throughout the month of May. MSU also set up a fund to assist myositis patients with $1,500 to cover emergency household expenses and medical bills.

For Jerry, working with the caring, supportive, engaged and passionate myositis community on a daily basis is rewarding:

“It’s beyond gratifying to know we provide fellow patients and caregivers with the platforms, programs and resources they need to thrive while living with a chronic and debilitating rare disease.”

Whenever MSU receives a heartfelt note of gratitude and appreciation, it becomes palpable to both Jerry and Lynn how important and impactful their work is for the myositis community.

Finding innovative ways to elevate the myositis community

Patient needs come first to the MSU leadership, which is part of why they seek out partnerships that can amplify their work.

Recently, they partnered with the Global Healthy Living Foundation to give myositis patients a more prominent voice in the chronic disease community.

MSU is also proud to be the first myositis organization to recognize and endorse AllStripes’ research program to the myositis community.

“AllStripes thinks big and envisions a future for rare disease research beyond the traditional,” said Lynn. “We connected with them immediately, as they share the same values we have as an organization.”

Because of Jerry’s background in web development and design, what excites him about working with AllStripes is the technology. AllStripes’ “technology allows direct patient involvement in non-traditional medical research, and is truly empowering for patients who want to contribute to research,” he said.

When Lynn and Jerry are not coming up with innovative ways to connect with patients and caregivers or hosting webinars, you might find them reading an inspiring book.

High on their list for rare disease patients and leaders: David Fajgenbaum’s “Chasing my Cure” and Paul Kalanithi’s “When Breath Becomes Air.” Both are books that emphasize living life with purpose, which Jerry and Lynn find each day.

“The clock is ticking on any rare disease and at MSU, until that cure comes for myositis, we are doing what we can to help improve the lives of patients and caregivers in our community,” Jerry said.

Patients affected by myositis can find the opportunities available to them, including support, financial assistance, research, and other programs on MSU’s website and social media channels.