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Myositis Support and Understanding Association, Inc

Lincoln, Delaware

Cause Description:
Description: Myositis Support and Understanding is a growing organization founded on the idea that even though people, with this rare disease called Myositis, are diverse and far-stretched across the globe, they can come together to share information on the effects, commonalities, and complexities of Myositis to make each other’s lives better. Through individual trial and error, similar experiences, and empathy for each other, we are building a supportive and informational network of camaraderie in which people can better understand their disease, effectively advocate for themselves, and realize they don’t have to be alone in their struggles. We hope that our members will feel informed and empowered. At the end of each day, if even one new member can say, “I’m relieved to know that I’m not the only one and that my experiences are real,” we will count ourselves a success! Our ultimate goal is to providing financial assistance to our members on an as-needed basis to help cover the following extraordinary circumstances: expensive treatments that are not covered by insurance, travel expenses to see one of few doctors who specialize in Myositis, and help with living expenses while they transition from an active working life to one where they are forced to go on Social Security Disability. We will also contribute any excess funds, if any, to Myositis cure- and treatment-centered research organizations to help further our shared goals. Mission Statement: Myositis Support and Understanding (MSU) is dedicated to improving the lives of Myositis patients through self-advocacy programs, need-based financial assistance for medical-related expenses, and to provide education and support for patients, caregivers, healthcare providers, and the general public about Myositis. MSU will foster direct involvement with other Myositis organizations to help promote treatment innovation and research with our collective eyes on a cure and provide financial support to organizations that share similar visions.

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