#MyositisLIFE Submission

Lincoln, DE – May 1, 2016 What is your #MyositisLIFE? May is Myositis Awareness Month. Myositis Support and Understanding Association (MSU) believes in Knowledge in Action! We want to show the world that Myositis patients have many different faces and lives. We are not defined by Myositis; it is just something we have. We are doctors, lawyers, accountants, teachers, nurses, artists, writers, singers, parents, grandparents, aunts, uncles, brothers, sisters, friends, animal-lovers, gardeners, travel-enthusiasts, and more.

To celebrate and raise awareness, MSU has scheduled many activities to promote awareness and to educate. For a full listing, please visit the Awareness page on our website, www.UnderstandingMyositis.org/awareness.

  • #MyositisLIFE Mosaic – We have encouraged members to submit snapshots of their lives through photos, videos, poems, songs, articles, etc. We want to show the world that while we may have Myositis, it doesn’t have us… We can, and do, lead rich lives even with our rare, often debilitating diseases. These #MyositisLIFE submissions will be shared throughout awareness month.
  • Video Chats – We have scheduled interactive video chats by authors, nurses, laughter yoga instructors, caregivers, and patients to entertain, build community, and to educ8 and advo8 for ourselves.
  • Social Media outreach – As always we want to increase awareness of Myositis so we have again enlisted the Thunderclap tool. This helps us to multiply our reach exponentially. We hope you will join our message at https://www.thunderclap.it/projects/40420-myositislife-may-awareness.
  • Fundraising – MSU operates an all-volunteer board and staff, but our programs, services, and platforms cost money. We operate three Facebook support groups boasting over 2000 members, we have a brand new interactive membership website chock full of resources and ways to connect, we offer regular video chat sessions, we are soon launching our financial assistance program to provide emergency funds to Myositis patients in need of financial help for medical expenses, medical travel, and household expenses, and we continue to listen to our constituents to build new programs where needed. If you are able to help support our mission please contribute to our Myositis Awareness Fundraising Campaign at www.gofundme.com/myositis or donate directly on our website’s donate page

MSU celebrates its one-year anniversary during Myositis Awareness Month

Although we have been operating as an organization since the beginning of 2014, we officially incorporated on May 13th of 2015. Therefore, we are celebrating our one-year anniversary during Myositis Awareness Month.

Over this past year, MSU has made great strides in the Myositis community through building education and support programs, an overhaul of our website to make it easy-to-read and understand and adding our very own social network, the Myositis Network, to our website. We are also getting positive recognition in the Myositis medical community. We are still a very young organization that requires funding to continue moving forward with our mission, goals, and your ideas.

We hope you will visit understandingmyositis.org to see some of our amazing #MyositisLIFE stories, videos, poems, and photos, and find out how you can help MSU achieve its goals of improving the day-to-day lives of Myositis patients through education, support, and financial assistance during Myositis Awareness Month, and all year long.

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Myositis Support and Understanding Association (MSU) is a 501(c)(3) nonprofit organization with a mission to improve the day-to-day lives of Myositis patients. MSU is a patient-centered organization, founded by Myositis patients, for Myositis patients, and believes education, support, advocacy, and assistance are key to helping patients and caregivers. As a nonprofit, we rely on donations for funding and volunteers to help manage our fast growing organization.

View more information: Myositis Support

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