From lighting up buildings to issuing local proclamations, efforts are underway to mark Myasthenia Gravis Awareness Month, observed each June for 20 years now.
Coordinated annually by the Myasthenia Gravis Foundation of America (MGFA), the campaign is aimed at heightening public awareness of myasthenia gravis (MG), a neuromuscular disorder that affects about 20 of every 100,000 individuals globally.
MGFA is offering a 23-page toolkit to raise awareness that provides ideas for disease education and outreach even during the COVID-19 pandemic, when most people are practicing social distancing or staying at home.
Toolkit suggestions include using social media to share events and stories, including hashtags such as #MGStrong and #MGFA. The kit also includes instructions for creating a Facebook fan page or event, and basic information about how specific social media platforms work.
Other ideas include putting up MG Awareness posters in stores, pharmacies, and other public places; disseminating facts about myasthenia gravis; discussing personal experiences at a school, medical center, or other group; engaging organizations in designing campaign posters; communicating with elected officials about legislation that affects myasthenia gravis; and writing an editorial for submission to a news outlet about the need for research funding and greater disease awareness.
Supporters are also encouraged to ask local businesses to give a discount to customers who bring in a handmade snowflake with #MGStrong printed on it. Myasthenia gravis is often called the “snowflake disease” because it differs considerably from person to person and from time to time.
The toolkit also provides information about how to make local officials aware of MG Awareness Month and to request a proclamation, as well as guidance for potential news stories about the month. Ideas for gaining coverage include inviting media members to an event or community gathering, or sharing a milestone reached in a support or volunteer group for myasthenia gravis. The toolkit includes a sample “media alert” or invitation.
There are also tips on how and when to “pitch” stories to media outlets, how to prepare for reporters’ questions, and what to do after the story is aired or published.
Supporters are asked to help raise awareness by providing brochures to local healthcare providers and professionals, and by promoting participation in the organization’s nationwide MG Partners in Care program, which recognizes and supports quality care for people with myasthenia gravis.
MGFA is again asking that streetlights and landmarks — such as corporate buildings, sports stadiums, and bridges — be illuminated in teal, the official MG color, throughout June. Twenty-six states participated in the effort last year, including the United Center in Chicago, and Legislative Hall in Dover, Delaware. The toolkit has instructions for requesting and organizing a lighting.
For more campaign information, contact the MGFA at 800-541-5454, or write to [email protected]
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