MYOSITIS SUPPORT AND UNDERSTANDING ASSOCIATION

We are putting education into action. We are thankful for the trust the Myositis Community has put in us to be the voice of the patient. We are a continually growing, all-volunteer, all-virtual, patient-led organization. We keep overhead low so those funds are used to help patients directly through our Myositis Patient Financial Assistance program. Since the start of the program in 2017, we have given $250k. We know Myositis affects most aspects of our lives, including our financial health. This program helps to alleviate that stress so patients can focus on their health.

Myositis, like many chronic or disabling illnesses, affects our mental health. We are working with The Myositis Coalition, a group of myositis organizations worldwide, to determine what we can do to provide for this need. Since 2016 we have been providing Zoom support groups, offering vital peer-to-peer support that was missing until MSU. Over the years, we expanded our support groups and platforms, now providing support on Inspire, Facebook, Zoom, and Clubhouse.

To position ourselves in patient-centered research, and under the direction of Lynn Wilson, VP, and Director of Patient-Centered Research, we brought on Manuel Lubinus as Chief Science Officer. Manuel brings a Ph.D. in immunology and many years of experience in research. We also wanted a truly patient-centered physician/researcher and we are blessed that Dr. Salman Bhai has joined us as our Medical Advisor.

Patient-Centered Research this year will focus on Adult Dermatomyositis and Inclusion Body Myositis. We are founding partners for the Allstripes research platform for both DM and IBM. We are hosting an FDA Listening Session on Adult Dermatomyositis with the goal of informing the FDA that research and clinical trials for DM are not a "one-size-fits-all" approach.

To continue growing, we just launched our Volunteer Program and in 2022 we will focus on training future leaders. We plan to double our all-volunteer staff so we have our team ready to continue our work and increase outreach and awareness.

We are putting education into action. We are thankful for the trust the Myositis Community has put in us to represent the voice of the patient. We are a continually growing, all-volunteer, all-virtual, patient-led organization. We keep overhead low so more funds are used to help patients directly through our Myositis Patient Financial Assistance program. Funding for this program is essential, including traditional fundraising and The Myositis Empower Walk, our signature fundraising and community-building event, which continues to grow. In 2019, we raised $18k. In

Since the start of the program in 2017, we have given $250k. We know Myositis affects most aspects of our lives, including our financial health. This program helps to alleviate that stress so patients can focus on their health. Our program, not a copay assistance program, helps those in need to purchase costly mobility/assistive devices, emergency household expenses, and medical bills.

Myositis, like many chronic or disabling illnesses, affects our mental health. We are working with The Myositis Coalition, a group of myositis organizations worldwide, to determine what we can do to provide for this need. Since 2016 we have been providing Zoom support groups, offering vital peer-to-peer support that was missing until MSU. Over the years, we expanded our support groups and platforms, now providing support on Inspire, Facebook, Zoom, and Clubhouse.

To position ourselves in patient-centered research, and under the direction of Lynn Wilson, VP, and Director of Patient-Centered Research, we brought on Manuel Lubinus as Chief Science Officer. Manuel brings a Ph.D. in immunology and many years of experience in research. We also wanted a truly patient-centered physician/researcher and we are blessed that Dr. Salman Bhai has joined us as our Medical Advisor.

Patient-Centered Research this year will focus on Adult Dermatomyositis and Inclusion Body Myositis. We are founding partners for the Allstripes research platform for both DM and IBM. We are hosting an FDA Listening Session on Adult Dermatomyositis with the goal of informing the FDA that research and clinical trials for DM are not a "one-size-fits-all" approach.

To continue growing, we just launched our Volunteer Program and in 2022 we will focus on training future leaders. We plan to double our all-volunteer staff so we have our team ready to continue our work and increase outreach and awareness.

We believe in transparency and have a long reputation as an organization to trust. We continue to build that trust by staying true to our mission and our values; patients are first in all we do. Our ability, through our direct relationships with our members and the myositis community, to recruit those who are interested in volunteering helps us ensure we have the staff we need to make our dreams come true.

We are not afraid to try new things. With the varying education and experiences our volunteers bring, we are set to succeed in 2022 and well beyond.

In 2016, we created the first-ever Myositis Online Video (Zoom) Support, Activity, and Educational sessions for Myositis patients and caregivers. We continue to grow and now offer 110 video and audio support sessions per year. We continue to adapt to the needs of the community in creating added ways to connect and share experiences, how many truly learn about their illness.

Our Financial Assistance Program helps patients with costly mobility and assistive devices, medical bills, and emergency household expenses. We reached a significant milestone. Since 2017, we have given over $250k in direct patient assistance, making an immediate impact on the lives of many families.

Putting education into action, example: We know that movement/exercise with Myositis is now considered a treatment, especially in inclusion body myositis (IBM). Knowing this, we launched "Myositis Support Gets Moving" on Clubhouse, a patient-led program where all who are living with Myositis can join to get support, motivation, and have discussions about any barriers to their individual movement and protein intake plans. It's through education and open, honest discussions together with other patients and care partners that we can help improve health and wellness.

In 2020, Manuel Lubnius, Ph.D. (immunology) joined the MSU Team. And, in 2021, Dr. Salman Bhai joined us as Medical Advisor. We are working together with other prominent myositis researchers and clinicians for patient surveys and education, and getting directly involved in patient-centered research projects.

We have partnered with pharmaceutical companies for clinical trial matching and to assist in recruitment efforts, as well as working together on patient-centered projects. These relationships put patients front in center in every interaction because we are myositis patients and care partners too. We also work to get the community involved through surveys, sharing experiences, and compensated research opportunities.

Upcoming:

- FDA Listening Session on Adult Dermatomyositis on April 26, 2022
- Publication of Pain and Myositis paper
- Build upon and develop new relationships with pharmaceutical companies, other organizations, academia, and businesses.
- Building upon our nonprofit brand and a strategic communications plan to better focus on providing for our members, supporters, and followers.
- New Volunteer Program helping to build future leaders in the Myositis Community.