MGFA Events Set to ‘Turn Awareness Into Action’ Throughout June

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by Mary Chapman |

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MG Awareness Month activities

From contributing to an interactive activities map to taking up challenges and advocating for local proclamations, supporters are set to mark Myasthenia Gravis Awareness Month, held each June.

The aim is to raise global awareness among the general public, as well as among policymakers, public authorities, industry representatives, scientists, and health professionals.

Awareness and education are vital to increasing the recognition, diagnosis, understanding, and management of myasthenia gravis (MG), a neuromuscular disorder thought to affect 20 in every 100,000 individuals globally.

“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,” the Myasthenia Gravis Foundation of America (MGFA) states on its Awareness Month webpage.

MG Action Month — Turning Awareness into Action is this year’s theme. MGFA has a host of events and activities planned, including a live, virtual interactive map that showcases individual stories, with states and countries “lighting up” to indicate Awareness Month activity. The organization is inviting the entire MG community to participate.

MGFA is also offering a 25-page toolkit that includes ways supporters can get involved and take action for the community. Ideas include joining an MG Walk, using social media to share MG experiences, posting MG Awareness flyers in public places, giving presentations, writing elected officials about MG, and inviting media to an event or community gathering.

The toolkit also contains tips for social media, facts about MG, suggestions about how to write an opinion piece for a newspaper, and guidelines for requesting Awareness Month proclamations from city and state governments. Participants may also glean practical ideas and instructions on getting involved and creating awareness through an MGFA “how to” presentation.

Upcoming events include an online, low-impact yoga seminar on June 8 at 6 p.m. ET, and a virtual Paint N’ Sip event on June 22 at 7 p.m. ET offering “best practices and techniques” for acrylic and watercolor painting.

A first meeting of the newly formed MGFA Caregiver Support Group is set for June 12 at 1 p.m. ET, and a wellness webinar about inspiration will take place on June 17 at 3 p.m. ET.

There will be a webinar on June 24 at 2 p.m. ET about the latest in MG research, particularly focused on the treatment candidate rozanolixizumab, being developed by UCB. Registration is also open for the MGFA Southeast Regional Online Conference, to be held on June 26.

Further details and registration and other links are available on the group’s Awareness Month webpage.

In addition to having governments issue proclamations, the organization also encourages supporters to “take action” by advocating for the Speeding Therapy Access Today (STAT) Act of 2021, which aims to speed both the development of, and patient access to, therapies for rare diseases like MG.

Other ideas include “lighting up the world in teal,” getting buildings and landmarks to be illuminated this month in the official color of the MG community. They also include pitching stories about the challenges MG patients face to media outlets.

Two MGFA challenges are open to supporters. In the Cookbook Challenge, participants are asked to send their favorite recipes to the organization, which will then select the best ones for publication in an MGFA MG Cookbook, which the organization is producing for the holiday season.

The MGFA Design Challenge calls on supporters to produce and submit a creative T-shirt design that carries the message of Turning MG Awareness into Action. The organization will turn the winning designs into actual T-shirts.

In addition, the organization is inviting supporters to participate in upcoming online wellness seminars, and to be active throughout the month on social media. Participants may create videos or take photos of themselves or family members, and “publish fun, creative stuff so everyone knows what myasthenia is all about” using the hashtag #MGStrong.

2021 Myasthenia Gravis Survey Results

BioNews Survey Infographic

Myasthenia Gravis News conducted a survey from Feb. 11-March 28 to gain greater insight into the characteristics of the MG community and disease management. Results of the survey have now been published. Click on the image to view the infographic, and click here to read the story.