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MG Awareness Month – Turning Awareness into Action

June is MG Awareness Month around the world. It is an important time to Take Action and create awareness and understanding of the challenges and opportunities faced by everyone in the MG Community. This year, we are “changing” the theme to MG Action Month – Turning Awareness into Action - and we are offering specific calls to action for the MG Community and beyond to find creative ways to show that WE ARE MUCH MORE THAN OUR MG.

Resources | Events | Take Action

Every year, the MGFA community comes together during the month of June to boost efforts surrounding fundraising, research, and advocacy to support people affected by MG.

 

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. 

 

Upcoming Events

ONLINE YOGA SEMINAR FOR MG: Join Katie Oradini on Tuesday, June 8th at 6:00 p.m. Eastern for an online, low-impact Yoga Class that can help all our friends in the MG Community. Katie honors her Mom who has MG, and her class starts with seated yoga and moves to some slightly advanced and relaxing movements. MG patients will learn a lot to help with their physical and mental wellness. Registration is now open.

PAINT N’ SIP: Join several artists from the MG Community including Erin Bernau on Tuesday, June 22 at 7:00 p.m. Eastern for a fun, online, Paint n’ Sip event, so you can learn some best practices and techniques for acrylic and watercolor painting. By the end of the session, you'll have a full acrylic painting that you can frame. Registration is now open.

First-ever MGFA Caregiver Support Group: We are pleased to announce the formation of MGFA's first Caregiver's Support Group. The very first meeting will be on Saturday, June 12 at 1:00 p.m. Eastern. MGFA will introduce our new Support Group Leader Toni Gitles who is a caregiver consultant and MG Patient. Join the zoom meeting on the appropriate date and time.

https://zoom.us/meeting/register/tJIvde2rqTIsEtYqY8iXRpWPrjfCVBTDhyZo

MGFA Wellness Series Webinar about Inspiration: Thursday, June 17 – Learn to be positive and hear about inspirational stories of myasthenia community members. Registration is now open.

What’s New in MG Research: Update on Rozimab: Thursday, June 24 – Join us for this UCB clinical trial update on Rozimab presented by Dr. Bril. Registration is now open.

MGFA Southeast Regional Online Conference: Saturday, June 26 – Join our community friends and medical professionals in the Southeast USA. Open to anyone, anywhere. Registration is now open.

MGFA #MGMonthChat Twitter Chat: Tuesday, June 29 - Join MGFA and J&J Janssen for a first-ever Twitter TweetChat to highlight key awareness activities, discuss medical and clinical information, and address questions about MG challenges. Just go to Twitter and use the hashtag #MGMonthChat to join in on the online conversation.

 

Take Action on These Ideas

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.

LIGHT UP THE WORLD IN TEAL: As many know, the color teal is the official color of the MG Community. You can help us light the world in teal by contacting the real estate management companies of buildings and structures in your region (See page 23 of the Awareness Toolkit – and training to come) or take a digital photo of yourself in an engagement activity, and light up our Global Online MGFA Map. The map will be live on June 1, 2021.

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, and make sure they know that June is awareness month. 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.

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 starting on June 1, 2021.

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.

WELLNESS ONLINE SEMINARS: Volunteers will run fun, online seminars to improve your wellness and strengthen your body and mind. We will publish the schedule dates soon for the community.

SOCIAL MEDIA: Create videos, take photos of yourself or family with signs and MG shirts, wear teal, share MGFA social content, and spread the word about the challenges the MG Community faces through social media and email. Send notes and content to your friends and family, and publish fun, creative stuff so everyone knows what myasthenia is all about. And use the hashtags #MGStrong.

More resources and information will be available soon.

A World Without MG