Myasthenia Gravis Awareness Month features events spanning the globe
Advocacy groups look to make a difference by helping speed diagnosis
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- June is Myasthenia Gravis Awareness Month, focusing on global understanding of the rare autoimmune disease.
- Advocacy groups are hosting events and providing resources to speed diagnosis and improve care.
- Symptoms include muscle weakness and fatigue; diagnosis is often delayed.
June is Myasthenia Gravis Awareness Month, and advocates around the world are planning a range of events to raise awareness of myasthenia gravis (MG).
“MG community members, including patients, care partners, and healthcare providers, host advocacy activities in June each year to promote a broader global understanding of the rare autoimmune disease myasthenia gravis and how it impacts patients’ quality of life,” the Myasthenia Gravis Foundation of America (MGFA) stated in a press release emailed to Myasthenia Gravis News.
MG is caused by antibodies that block signaling from nerve cells to muscle cells, leading to symptoms such as muscle weakness and fatigue. According to the MGFA, as many as 100,000 people are living with the disease in the U.S. alone.
And although treatments to manage the disease and its symptoms are available, MG is rare and often goes unrecognized, meaning many patients face long delays before they can access appropriate care.
“It could take a year — or more — for someone with myasthenia gravis to receive a diagnosis. That is too long to live with life-changing symptoms and without treatments that can help,” Michael Antonellis, global vice president for marketing and communications at the MGFA, told Myasthenia Gravis News. “Raising awareness about MG can potentially help those impacted find answers faster. Taking action for MG awareness makes a difference.”
Light the Globe for Myasthenia Gravis
To help community members worldwide spread awareness this June, the MGFA has provided a variety of online resources, including an advocacy toolkit available in eight languages and multiple ways to raise awareness and funds.
“We encourage everyone in the MG community and beyond to do something — large or small — to raise awareness this June,” Antonellis said.
The MGFA is just one of many advocacy organizations worldwide launching initiatives to mark this month of awareness. Starting today, advocates are participating in Light the Globe for Myasthenia Gravis, in which landmarks and homes around the world will be lit in teal to raise awareness of the disease.
Myasthenia Gravis is a rare disease that is often invisible. During the month of June, we focus on awareness, research, and advocacy for this chronic illness.
According to the Chicago-based advocacy group Conquer Myasthenia Gravis, the Prudential Plaza will be lit on June 5, and the Willis Tower is expected to be lit June 6-7. The organization is asking supporters to snap a photo of their home or a landmark in teal, tag Conquer MG, and publish on social media using the hashtag #LightTheGlobeForMG. It will also be holding a Snowflake Shuffle fundraiser in Elmhurst, Illinois, on June 7.
“Myasthenia Gravis is a rare disease that is often invisible,” Alicia Peconio, who lives with MG and serves as chair of the board of trustees for Conquer Myasthenia Gravis, said in an email to Myasthenia Gravis News. “During the month of June, we focus on awareness, research, and advocacy for this chronic illness.”
Snowflake Saturday, MG Awareness Day events planned
Throughout the month, the Myasthenia Gravis Association (MGA) will be running an awareness campaign on its Facebook and Instagram pages. The association is also hosting two of its Snowflake Saturday events — free in-person gatherings that offer connection and education for the MG community. One will take place on June 6 in Wichita, Kansas, and the other on June 13 in Des Moines, Iowa.
And in recognition that June is also Pride Month, the MGA is hosting a virtual meetup today specifically geared toward people with MG who identify as LGBTQ-plus.
“The Myasthenia Gravis Association is committed to raising awareness for [MG year-round] in addition to June being the official awareness month. We are poised to do this through our advocacy networks, industry partners, social media channels, events, and activities,” Allison Foss, executive director of the MGA and a person living with MG, said in an emailed statement to Myasthenia Gravis News. “We know that with more awareness, we are steps closer to improved treatment options and one day, hopefully. a cure.”
The MG Holistic Society is also hosting four free in-person MG Awareness Day events to connect, educate, and empower the MG community:
- June 6 in Stonecrest, Georgia
- June 13 in the Milwaukee, Wisconsin, area
- June 20 in New Orleans, Louisiana
- June 27 in the Montgomery, Alabama, area
“Raising awareness about Myasthenia Gravis … isn’t just about education — it’s about dignity, being seen and understood,” Michele Andwele, vice president of communications at the MG Holistic Society, said in an email to Myasthenia Gravis News. “MG Awareness Days empowers people living with MG and their families to recognize that MG is a part of life, but life is more than MG.”
Andwele added that the biggest event, in Stonecrest, aims to “amplify the conversation about MG and its impact on individuals and communities” and “equip those living with MG with the latest information on treatment options and promote wellness through healthy living practices.”
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