Myasthenia gravis awareness starts local, goes global in June

Spreading awareness about myasthenia gravis (MG) during the month of June can be as simple as talking about the disease in your neighborhood and community.

Hosting awareness events locally not only fosters engagement and relevance, but also helps people cope with the rarity of this autoimmune disease. MG is thought to affect 150 to 200 out of a million people worldwide, with approximately 70,000 to 90,000 of them living in the U.S.

MG awareness events in the US

The Myasthenia Gravis Foundation of America (MGFA) is focusing on a theme of turning awareness into action for the month of June and beyond, “making sure people understand the challenges and opportunities faced by those diagnosed with myasthenia gravis and their caregivers.”

Hannah Ensor, who lives with MG and is an MGFA patient ambassador, believes better access to MG treatments, faster time to diagnosis, and improvements in medical care all start with wider awareness of MG.

“I am participating in the MGFA DARE to CARE campaign, and I created a team for the MG young adults support group (MAYA),” Ensor, who is the MGFA’s 2024 Emerging Leader Award recipient and fundraising for the organization for the third year, said in a written statement to Myasthenia Gravis News. “I also used creative software product Canva to create Instagram / Facebook images that I will be constantly posting throughout the month to raise awareness for the campaign linking to my fundraising page.”

Dare to Care is MGFA’s new signature fundraising campaign

Launched in 2023, Dare to Care is the MGFA’s new signature fundraising campaign. Participants are challenged to dare their friends and family to care about MG and show their support by helping them meet their fundraising goal during the month of June. Those interested in signing up may do so here.

“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 a press release.

“Myasthenia gravis 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. The needle continues to move and each year we see more impact,” Masterson said.

The MGFA is offering an awareness toolkit that includes tips for rallying your local community and businesses, as well as suggestions for speaking with journalists, writing an opinion piece, or telling your story and spreading awareness on social media. Also included is a fact sheet with information on what MG is, which symptoms it causes, and how it is treated.

Renaming it “MG Awareness Action Month,” the toolkit suggests taking a hyper-local approach to building awareness. For example, using sidewalk chalk to create an #MGStrong mural in the driveway or on the sidewalk, or creating colorful signs that can be displayed on the lawn or in windows. The foundation is also offering a downloadable lawn sign that can be printed.

The MGFA is also bringing back their popular MG Walks in select cities in the U.S., and encourages people to take a photo during the month of June and share it on its online awareness wall.

The foundation urges people living with MG to write to elected officials, requesting an MG awareness month proclamation, to connect with community leaders and businesses to set up fundraisers, and to ask building owners to light up their buildings teal for MG awareness.

Participants are also being encouraged to tell how they are planning to turn awareness into action during the month, follow and share MGFA content on social media, and visit the organization’s online store where they can buy items and merchandise to showcase their support.

MG awareness events in Canada

MG community members from many countries are uniting in an international collaboration to conduct activities — ranging from events and gatherings to legislative advocacy, fundraisers, and more — to raise awareness about the disease’s impact and highlight new treatments and research advancements.

Manley Lavender, executive director of the Myasthenia Gravis Society of Canada, said the country’s immense breadth — the second largest country in the world by land mass — means that Canadians living with MG often have to host individual events.

“Our biggest challenge is geography,” Lavender said in an interview with Myasthenia Gravis News. “But that doesn’t mean we’re not unified in our approach. We’re calling our awareness month ‘MG Active,’ and everyone is doing what they can. We’ll be talking about it on social media, extending our awareness efforts into the world.”

Lavender will lead an MG awareness walk on June 20 in the town of Port Perry, Ontario, and host what he calls his second annual “golf and MG awareness day” on June 22.

“We have people from P.E.I. through to B.C. hosting events that raise funds and awareness for MG in June,” added Lavender, who lives in the Kawartha Lakes area of Ontario.

The CN Tower in Toronto, Ontario, will light up in teal on June 3 after dark, while Niagara Falls on the Canadian side will also be lit in teal on June 15 at 10:15 p.m.

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MG awareness events in Europe

All United for MG, the coalition that represents people living with MG from several European countries and that will start being part of the European Myasthenia Gravis Association (EuMGA) this July, will celebrate their second Myasthenia Gravis Awareness Day on June 2.

This past March, the coalition launched an online petition that seeks to bring changes in the MG and broader rare disease community, leading up to the Awareness Day and the European elections. Thus far, more than 1,600 people have signed the petition. The goal, according the coalition, is for 5,000 signatures to be collected.

“The burden of MG is not universally understood or recognized across Europe. Raising awareness and amplifying the patient voice can drive meaningful change. The aim of the petition is to mobilize every citizen to support patients and the broader rare disease community. By uniting in this collective effort, we can foster greater understanding, advocate for improved resources, and ultimately enhance the overall quality of life for those affected,” Lutgarde Allard, EuMGA’s president, said in a press release.

In the U.K., Myaware is using the month of June to spread awareness about MG among general practitioners (GPs) with the goal of ensuring patients receive a timely diagnosis and start treatment as soon as possible. Other ways of getting involved include downloading and sharing a GP leaflet, fundraising, purchasing merchandise, and sharing activities on social media.