MG Awareness Month focuses on community, action
Community Spotlight campaign aims to raise awareness, empower
Organizations are holding events and activities in June in recognition of Myasthenia Gravis Awareness Month, an annual observance that aims to raise awareness of myasthenia gravis (MG), an autoimmune disease that affects 90,000-100,000 people in the U.S. alone.
“Throughout June, Myasthenia Gravis News is recognizing awareness month with a variety of stories that represent different perspectives on life with MG that we hope will inspire and empower our readers,” said Kevin Schaefer, associate director of community content at Bionews, the parent company of Myasthenia Gravis News. “These stories highlight some of the unique challenges of living with MG, as well as stories of hope, inspiration, and other topics.”
Kicking off the Community Spotlight campaign on June 1, Jasmine Nathan, diagnosed with generalized MG in 2018, shared how cultivating resilience has empowered her to face every challenge in her life head on.
Retha De Wet shared her journey from MG diagnosis in her 20s through treatment, remission, marriage, and recurrence as she transitioned to motherhood.
The series can be followed on Facebook, Instagram, or X using the hashtag #MGSpotlight.
Turning awareness into action
The Myasthenia Gravis Foundation of America (MGFA) is urging the MG community to “Turn Awareness into Action” this June, according to an association press release.
“This time of the year is so special and important because the entire global MG community leans in and takes action to do something — no matter how large or small — in order to drive awareness of this debilitating rare disease,” Samantha Masterson, MGFA’s president and CEO, said in an email to Myasthenia Gravis News.
The disease “profoundly impacts the lives of those diagnosed, but as we continue to educate and inform, and advocate and empower, and fund critical research, we believe that our work could lead to improved diagnosis times, and an overall improved quality of life through better treatments and disease management strategies,” Masterson said. “The needle continues to move and each year we see more and more impact. We are Turning Awareness into Action every year.”
The MGFA is reprising its signature Dare to Care fundraising campaign to raise awareness and funds to support its mission to create connections, enhance lives, improve care, and cure MG. Participants can earn fundraising prizes if they sign up for the campaign.
The organization offers fundraising ideas including bake sales and give-back nights with local businesses, in which partial proceeds from sales benefit the MGFA.
Tiff’s Treats is helping through its Cookies for Community campaign, with 20% of all orders through June 15 benefiting the MGFA. Orders can be placed online or in person using the promotional code MGFA.
Supporters can also make direct donations to the foundation.
The MGFA provides a toolkit with resources to help supporters spread awareness. These include downloadable posters and lawn signs, social media graphics with facts about MG, and a how-to guide to help patients and caregivers tell their stories.
Anyone interested can learn more about how to raise awareness in an MGFA webinar available on YouTube.
Other ways to take action and raise awareness include securing a proclamation designation for June as MG Awareness Month, reaching out to local media, and lighting up local landmarks in MG’s signature teal color. The MGFA encourages supporters to share their photos and stories about raising awareness on its MG Awareness Wall.
Snowflakes, baking cakes
The Myasthenia Gravis Association (MGA) is hosting “Snowflake Saturday” on June 7 in Des Moines, Iowa; Little Rock, Arkansas; and Wichita, Kansas.
“Those living with Myasthenia Gravis are called “snowflakes” because each experience with the disease is unique,” the organization says on its website. The “family-friendly event” is an opportunity to “connect with industry partners to discover the latest therapies and products, enjoy lunch, and take part in exciting raffles for great prizes,” the MGA said.
Conquer MG, formerly known as the Myasthenia Gravis Foundation of Illinois, is hosting its annual Viking Challenge for MG, with an in-person walk scheduled for June 8 in Elmhurst, Illinois. Participants can also sign up for a virtual challenge. Conquer MG offers its own advocacy toolkit with ideas for supporters.
The European Myasthenia Gravis Association is urging supporters to post on social media using the hashtags #aVoiceForMG, #MyastheniaGravis, #EuMGA, and #RareBarometer as part of its A Voice for MG campaign.
The association is co-hosting a high-level event to mark MG Awareness Month at the European Parliament in Brussels on June 12. Tomislav Sokol, a member of the European Parliament, will speak, followed by a discussion and Q&A session.
“Bringing together EU policymakers, persons with MG, healthcare professionals, and caregivers, the event will shine a light on the current gaps in diagnosis, treatment, and recognition of MG, one of many rare neuromuscular diseases still too often overlooked by national and European healthcare systems,” the organization said.
The U.K. advocacy organization Myaware is sponsoring fundraisers designed to bring people together through cake baking and quiz events. The organization provides fundraising packs including T-shirts, balloons, and leaflets, along with instructions on setting up a fundraising page.
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