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MG Awareness Month – Turning Awareness into Action

June was MG Awareness Month around the world and we Took Action and created awareness and understanding of the challenges and opportunities faced by everyone in the MG Community. This year, we "changed" the theme to MG Action Month – Turning Awareness into Action - and offered specific calls to action for the MG Community and beyond to find creative ways to show that WE ARE MUCH MORE THAN OUR MG. You can keep MG Awareness going this summer by engaging in the ideas below. 

Resources | Events | Take Action

 

Visit Our MG Awareness Month Interactive Map

MGFA invites you to show off your awareness activity and help us "light Up" the MG Awareness Month Interactive Map. Fill out the form on this page to submit photos of you engaging in awareness activity, and let's spread MG awareness around the world.

 

MGFA Awareness Resources

Check out our latest MGFA Awareness Toolkit Online HERE for fun and creative ideas to drive awareness no matter where you live in the world. Check out all the ways you can get involved and take action for the MG Community.

Also, read through the MGFA Awareness "How To" Presentation for ideas and instructions to help you Take Action and create awareness starting TODAY. 

Relieve stress and color: Check out our brand new #MGStrong coloring page. Great for adults and kids who want to show their commitment to the MG Community by showing that they are always #MGStrong - just like all those living with MG and their caregivers. DOWNLOAD the COLORING PAGE and print it out and GET CREATIVE!!

 

Watch Recordings of MG Awareness Events in June

PAINT N’ SIP: More than 100 members of the community joined several artists, including MG patient Erin Bernau, for a fun, online, Paint n’ Sip event. See the recording. Experience this Event Again with Video Recording.

MGFA Wellness Series Webinar about Inspiration: Learn to be positive and hear about inspirational stories of myasthenia community members. View the Video Recording of this Wellness Webinar.

What’s New in MG Research: Update on Rozimab: This is a UCB clinical trial update on Rozimab presented by Dr. Bril. View the Video Recording.

MGFA Southeast Regional Online Conference:  Community friends and medical professionals in the Southeast USA joined together online to learn about the latest MG research and best practices. Watch the Event Recording.

You Can Still Take Action on These Ideas

MGFA COOKBOOK CHALLENGE: Pull out your favorite recipe and send them to MGFA@myasthenia.org with the subject line MGFA Cookbook Challenge. We will select the best recipes and combine as part of an MGFA MG Cookbook that we are producing for the holiday season. Send in your submissions through July.

MGFA T-SHIRT DESIGN CHALLENGE: Build a creative T-shirt design and submit to MGFA@myasthenia.org and we will select winning designs and create actual T-shirts. Tie in the message of Turning MG Awareness into Action. Send in your submissions starting on June 1, 2021.

PROCLAMATIONS: Meet with or call legislative leaders to secure a PROCLAMATION officially declaring June as MG Awareness Month. Use our handy PROCLAMATION SAMPLE DOCUMENT to help you write a request. Please work on this soon to have it in time for June.

OUR MG VOICE: Make your voice heard in Washington DC by advocating for the Speeding Therapy Access Today (STAT) Act of 2021 (Bill H.R. 1730/S,760) (STAT Act). The STAT Act is a bipartisan bill aimed at improving the development and access to therapies for rare disease patients like those with myasthenia. The Every Life foundation has a clickable link to help you take action and contact your political leaders: Take Action | EveryLife Foundation for Rare Diseases.

MEDIA COVERAGE OF MYASTHENIA: Reach out to local broadcast and print media in your region, and “pitch” reporters to cover the challenges that MG patients face. Tell them your story, pitch them on key legislation, talk about your life with MG. Even write a article that you can post in their publication. More training coming but you can use these Media Document Guidelines to help you.

 

A World Without MG