MSU has come a long way since the beginning in 2010 with our first Facebook support group and subsequent 501(c)(3) nonprofit status approval in 2015. See some of what we have done and continue to do:
- Providing outreach to well over 17K people in the myositis community including patients and caregivers across all social media
- Developed and continue to maintain, at no additional cost* to MSU, a comprehensive myositis website that reaches an average of 11K new monthly users and receives over 25K monthly page views
- Advocating for our members by providing access to educational information, patient video support sessions, educational video sessions from Myositis specialists, and the latest in research and clinical trials, studies, and patient-clinical trial matching
- Launched our need-based financial assistance program that has now provided over $40K in patient financial support
Reflecting a sense of empowerment, hope, support, and change to come, while maintaining our roots as the same patient-centered, volunteer-managed myositis support nonprofit organization we have undertaken a rebranding effort. Our new logo and look will help to set us apart and minimize confusion. We are an independent organization.
Expanding our online reach and support to even more myositis patients and caregivers by partnering with Inspire, the #1 health community platform in the U.S. The myositis community will be available in early January 2019!
Our mission is to improve the lives and empower those fighting Myositis through education, support, awareness, advocacy, and access to research.
We are a patient-centered organization that provides:
- Independent, interactive online platforms that educate and connect patients, caregivers and family members with each other and with healthcare professionals.
- Educational resources for patients, families and the healthcare community.
- Need-based financial support for medical-related expenses.
- Information-based advocacy with all levels of policy-makers, insurance companies and other medical services and their decision-makers.
- Innovations in research and treatments through clinical trial matching and by contributing a portion of our donations when possible.
So what is changing in 2019?
There are many changes and new things coming in 2019. Some include:
- Expanding our support networks to reach even more Myositis patients and caregivers
- Providing more educational opportunities so patients with Myositis are better informed, can self-advocate, and are able to cope with this life-changing disease
- Providing more financial assistance to those patients in need and for educational purposes
- Partnering, collaborating and networking with other patient advocacy groups, academia, pharmaceutical companies, and others in the Myositis Community to advance the understanding and treatment of myositis
* The MSU website was designed, developed, and maintained by volunteers, and will continue to be so!