• ORGANIZATION PROFILE
  • MYOSITIS SUPPORT AND UNDERSTANDING ASSOCIATION MYOSITIS SUPPORT AND UNDERSTANDING ASSOCIATION

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Mission Statement

Myositis Support and Understanding (MSU) is dedicated to improving the lives of Myositis patients through public policy, self-advocacy programs, need-based financial assistance for medical-related expenses, and to provide support and education to patients, caregivers, healthcare providers, the general public, and legislators about Myositis.

Description

Myositis Support and Understanding is a 501(c)3 nonprofit organization founded by Myositis patients, for Myositis patients, and care partners. We began in 2010 as 1 FB support group and a goal of one-day being helping patients under a nonprofit. That goal came true in 2015, with much work and the support of many. We now have 3 FB support groups that offer education, emotional and spiritual support, and even some laughter.

Our current programs and services include financial assistance, education, support, advocacy, and video chat support and educational sessions. We try to provide each member with a personal experience while building lasting relationships, as it can be lonely living with a rare disease.

Our Financial Assistance program covers household expenses, medical bills, and travel expenses for myositis patients to see a specialist who may provide them with more information and treatment options that others doctors may not be aware of.

We believe in a "Knowledge in Action" approach. MSU’s board consists of real patients with Myositis, so we are able to fully understand what other patients go through. Our knowledge of Myositis, among its various treatments, complications, hardships and struggles give us a powerful base from which to formulate action plans. We are a tight-knit group that supports each other and others in our community.

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