MSU Social Networks

Myositis Support and Understanding: Social Networks

Subscribe to and follow our social networking sites to learn more and become involved with MSU. Share updates about Myositis and MSU with your friends and family to help promote education, awareness, and support.

Social networking is one of the BEST ways you can help others to understand Myositis and help us to promote awareness.

Follow our Social Networks

Help spread the word, learn new information and share with your family and friends!

Promoting Myositis Education & Awareness

Helpful tips on spreading the word about myositis and MSU

  • Use Hashtags! Hashtags are simply searchable categories preceded with the pound sign. Examples: #myositis #raredisease #msu #theStruggleisReal, #polymyositis, #dermatomyositis, #inclusionbodymyositis, #caregivers, etc. Hashtags can be used with almost all social networks.
  • Share Facebook posts, Blog posts and our site pages with your friends and family.
  • Include relevant images and links in your social networking posts. The use of images in social postings has been proven to create a higher click rate.
  • Create your own Tumblr.com microblog to share information, create a public journal to share your journey with Myositis, and to “like” our postings on myositis.tumblr.com.
  • “Like” our Facebook page, www.Facebook.com/UnderstandingMyositis.
  • Create a Google Plus and a Twitter account and “Follow” Myositis Support and Understanding. We will be hosting live chats in the future and we will be using both platforms to do so.

Help with Social Networks: Basic to Advanced

How to use YouTube to share your videos

To set up and share your videos on YouTube, there are a few things that need to be set.

1. If you don’t have an account, visit YouTube.com and create an account.

2. Or, if you have an account, login and click Upload in the top right corner and choose Public. (In order to share your video it must be marked Public)

3. In the settings box, be sure to add these:

  • Give your video a descriptive name using keywords (i.e. Myositis, Rare Disease)
  • Add a description to your video that will help others to find it. Again, keywords are important.
  • If you didn’t do this step above, set the video to Public.  If it is set to anything other than Public, we will not be able to share the video.

4. Once your video is uploaded, you can use the Share feature to get the link and then you can post it to Facebook or any other networks you are on. Always include #myositis in the post if your video is related. We can all track your myositis videos by clicking on that hashtag/keyword.

Using Hashtags to promote Myositis

Use Hashtags to promote Myositis conversations

Social networking is an effective and fun way to promote Myositis awareness, however, many do not understand how to use – or the importance of – hashtags.

A hashtag is simply a keyword which starts with a pound sign (#) and is related to the content of your post. The ultimate goal is to create a conversation around your topic or keyword. For example, this article talks about hashtags, therefore a hashtag which would focus on the subject of hashtags would look like this: #Hashtags.

For optimal performance, a hashtag should be one word. If you wish to use a key phrase, just combine the words and remove the spaces, like this: #LoveHashtags or #DachshundPuppies. Using both upper and lower case letters is acceptable for hashtag use such as #lovehashtags and #LoveHashtags, which are considered the same, and both will lead to the same topic/conversation list. Using two separate words such as #myositis #awareness is not the same as using a key phrase such as #MyositisAwareness. The first, #myositis, will provide posts under the keyword “myositis” while the second, #awareness, will provide posts related to the keyword “awareness,” but not specifically Myositis awareness.

Learn more about Hashtags

© Myositis Support and Understanding Association, Inc. 2010-2017. All Rights Reserved. MSU is a 501(c)(3) nonprofit organization.

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Get your Zebra Shirts & Hoodies Today!

Campaign for Myositis Awareness Month, May 2017

Purchasing a shirt from this booster will help us, Myositis Support and Understanding, with our many patient support programs, education, financial assistance for patients and upcoming programs.

This year, 2017, Myositis Support and Understanding’s awareness month theme is “Sometimes Zebras have spots!” We want to raise awareness about how the experiences, symptoms, and complications of this rare disease are different, even among the patients with the same disease. Doctors are now trained, when you hear hoof beats, look for zebras (rarities), instead of horses (common ailments); when in the past, they only looked for the most common ailments.

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Hi, this may be interesting to you: MSU Social Networks! The link is included below: https://understandingmyositis.org/socialnetworks/ --- Myositis Support and Understanding is a 501(c)3 nonprofit organization.