MPS Awareness Day 2016!

This year we are taking a new approach to honoring MPS Awareness Day, May 15, 2016. We are beginning our awareness activities on May 1. Below are some terrific ideas to ensure your social media networks are calibrated for the big event!

Take to the Skies Across America through Social Media

  • – After May 11th, visit and experience our virtual online Take to the Skies campaign. Include friends, families and colleagues in flying a virtual plane around the world to raise awareness for MPS and related diseases.
  • – Help us show the impact of MPS and related diseases by posting your photo on social media and sharing a few words of hope and encouragement with everyone. Use #MPSAwareness or #flyforMPS.
  •  – Update your Twitter and Facebook profile banners with the 2016 MPS Awareness Day images to show your support. Access the banners at the bottom of this post!
  •  – Post your loved one’s picture with an MPS Awareness Day Twibbon and share our cause through Facebook and Twitter.
  •  – Visit our Facebook page for daily updates! 


Host an MPS Awareness Day Event

Invite friends to join you in an MPS Awareness Day paper plane making party. Fly your planes together and share your story about why MPS is important to you. Make sure to take a picture and share it with us on social media. Include #MPSAwareness or #flyformps when posting.

  •  – In the classroom: Ask your class to show their support for raising awareness for MPS. Share your story and discuss how everyone can lend support in a meaningful way. Provide the supplies for everyone to make their own paper airplane and have schools post on their social media.
  •  – In the hospital: Share your story with your medical team and their peers and show them how they can learn more about MPS. Express what is important to you about having patient centered care. Ask your team if they want to participate in the Take to the Skies campaign, and post their photos to social media.
  •  – Text to GIVE: Translate this awareness into dollars for the fight! Have fun with your family and friends and text the word courage to 41444. Enter the amount to give followed by a space and your name! Watch our 2016 program dollars increase with your donations online at! Share Text to GIVE and check-in to see daily progress.


Share your Story and Build a Courage page

  •  – Create a Courage Page at and provide an opportunity for your Family to share the MPS journey and your unique story. Include pictures to help you raise awareness. This page can be used in Honor or in Memory of someone with MPS and can be used for fundraising. What is important is that you decide!


Advocate with your Legislator

  •  – Your legislators need to hear from you! Stay tuned for “click and send” action alerts in your email during May 1-15. These easy tools will be provided so you can become a super advocate. Support important legislation that will speed access to treatments and promote rare disease research. Help your legislators become #MPSAwareness.


Take to the Skies Globally

  • – Why limit those miles to the US? MPS is a global disease. After May 11th, broaden your flight plan at to also include friends, researchers, and stakeholders in the MPS Global Community.


Ready to take your story to the Press?

  •  – The Society has a press kit and resources to help you reach out to local media. Sharing experiences helps people understand what it is like to live with a rare disease. You can play an important role in this global awareness campaign by contacting TV, radio, newspapers, online reporters, or bloggers with information about MPS Awareness Day. Access the press kit here!


Every little bit helps!

There are many ways you can participate in raising awareness for International MPS Awareness Day. Discover the items that make you feel comfortable and remember that every little bit helps. Thank you for your efforts to help make this the year that everyone becomes #MPSAwareness.



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