Virtual Meetings, Fundraisers, Events Set for MG Awareness Month
Myasthenia gravis (MG) affects 20 of every 100,000 people, according to the Myasthenia Gravis Foundation of America (MGFA), which is working to help educate the public about the rare disorder as part of this year’s MG Awareness Month.
MG typically affects women under the age of 40 and men older than 60, but it can occur at any age, including in childhood. Its name means “grave, or serious muscle weakness” in Latin.
“Due to the rarity of myasthenia gravis, people living with the neuromuscular disorder can struggle to receive the right diagnosis, find information and get treatment,” Sindhu Ramchandren, MD, director of clinical development and clinical leader for neuroscience at Janssen Pharmaceuticals, said in an emailed statement to Myasthenia Gravis News.
“With these challenges, it is critical that we come together to build awareness and understanding about MG, offer support to patients, caregivers and families, and make space for new research and treatment opportunities to come,” Ramchandren added.
For starters, MGFA this June is providing a toolkit on its website to help raise awareness about the disease. The 25-page toolkit includes ideas for community education events — such as pasting posters around a neighborhood, having a local business give discounts to customers who bring in an #MGStrong Snowflake, and encouraging lighting up local buildings — tips on securing news stories, and social media best practices.
Additionally, the MGFA is making available for download from its website a poster-sized sign about MG Awareness Month that can be put on display in homes, offices, or community centers. MG-themed apparel can be purchased from the organization’s online store to also help drive awareness.
The nonprofit also is asking people to collect favorite recipes and submit them through July for its MGFA Cookbook Challenge, which will be included in its upcoming MGFA Online Community.
Later this month, MGFA will host an online event as part of its Wellness Webinar Series, which was created in response to the COVID-19 pandemic. The June 23 virtual meeting will help patients, caregivers, and physicians understand advanced directives — legal devices that allow patients to make known their medical wishes when they are no longer able to do so themselves.
Myasthenia Advocacy for Young Adults, a MGFA group that develops advocacy opportunities for young people, also will host a meeting on June 26.
MG Illuminate, an awareness initiative created by Argenx, kicked off this year’s MG Awareness Month by hosting a virtual event on June 1. Argenx is the maker of Vyvgart (efgartigimod), a treatment that lowers the number of circulating autoantibodies that drive MG.
Patients, caregivers, friends, and physicians who RSVP for the event also will receive a host of other benefits. They’ll be able to access a roundtable talk about self-advocacy, and an e-book, “Everyday Energy Savers,” that assists patients with conserving energy. There also is a micro-documentary, called “A Mystery to Me,” that is available for watching, as well as live viewing of landmark lightings. Past landmark lightings to kick off the month have included the Santa Monica Pier, Zakim Bridge in Boston, and Union Station in Kansas City.
The Myasthenia Gravis Foundation of Michigan will host one of its flagship fundraising events on June 25. It will feature a one-mile walk, run, or bike ride, an MG car show, face painting, and a cardio drumming class. A similar walk for awareness and fundraising through the Myasthenia Gravis Association of the Heartland will take place on June 18 in Wichita, Kansas. That event will be titled MGA Snowflake Shuffle 0.1K.
The Myasthenia Gravis Holistic Society, which promotes spiritual balancing, mental wellness, and herbs and supplements for treating MG, will host MG Awareness Day events in Green Bay, Wisconsin, and Atlanta, Georgia, on June 4. Both will offer opportunities for anyone with MG to learn more about the condition and nontraditional treatment options.
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