June has been an outstanding month with numerous activities and events organized by various national associations across Europe. This article highlights the efforts and achievements of these associations, listed in alphabetical order, showcasing their dedication to raising awareness and supporting those affected by myasthenia. Please note that the list is not complete, and the article will be updated as more information becomes available.
BELGIUM
The ABMM held an event in La Louvière, Wallonia, on June 2nd, where they facilitated a meeting for myasthenia gravis patients and founded a new MG patient group. Additionally, on the same day in Brussels, "The Royal Gallery" was illuminated to raise awareness.
BULGARIA
The Bulgarian Myasthenia Gravis Association is actively working to improve emergency medical assistance for people with Myasthenia Gravis (MG). In June, their work focused on developing an MG directive algorithm to ensure proper care during emergencies. This initiative, in collaboration with the Bulgarian Neurology Association, aims to standardise emergency procedures and improve patient outcomes.
On July 13 and 14, they have an event dedicated to this initiative.
Leading specialists in myasthenia gravis addressed various topics, including children's myasthenia gravis, thymectomy, rehabilitation, and physical activity, emergency capabilities, new treatment therapies, neurology consensus for MG treatment, first aid, and psychological support.
FINLAND
The Finnish MG Association published the newsletter in June number 2 for this year.
On April 13-14.4.2024, there were the annual MG days on a boat trip from Turku to Stockholm and back.
The doctor of the Finnish association had a great presentation related to treatments of MG on the boat for 4 hours and delegates could ask questions.
In July the organization will meet on a summer theatre day in Tampere including lunch.
FRANCE
The association Amis conducted an awareness campaign on social media about myasthenia gravis (MG) and physical activity, utilizing beautiful visuals and illustrations. They also promoted MG through dedicated events.
Website: https://www.myasthenie.fr
The AFM Telethon run a brilliant awareness initiative on social media called “Before/After MG” for MG Awareness Month. This campaign features patients' testimonies and pictures to highlight the disease's impact.
GREECE
The Greek MG Association marked MG Awareness Month with a special message from the president of the Greek Association of Myasthenia, Nadias Spingou, presented on the RESTART show on the Attica TV channel. This presentation covered myasthenia, new pharmaceutical developments, the association's activities, and events held in cooperation with European associations to inform and raise awareness for the Pan-European Day of Myasthenia.
Several monuments were illuminated.
ITALY
To mark the day, the Italian Myasthenia Association and Cardarelli Center launched "Myasthenia: Not Just Pills... the Experts Respond," featuring doctors answering common patient questions.
In June, the podcast “gMG Your Way Italia” released two new episodes.
Additionally, the webinar “Dialoga con AIM” continued live on Zoom, with recordings available on the AIM YouTube channel.
Patient testimonies were shared on the association's social media to increase awareness of myasthenia gravis.
Several monuments were illuminated.
Website:https://www.miastenia.it
POLAND
The MG Face to Face Association organized multiple events in June:
- June 7-13: The Tour de Miastenia - Face to Face initiative aimed to spread awareness of myasthenia gravis through a community of cyclists riding along the Wisła River, commemorating Marcin, Maria, and Ewelina, who passed away this year. More details can be found here:
The link to this Facebook event is https://www.facebook.com/events/377645245247672/?active_tab=discussion
they also have a sanction on their website dedicated to make donation for this event: https://miasteniagravis.pl/pages/tour-de-miastenia
- June 29-30: The first Nationwide “MG Walk with Face to Face” (PL: MG Spacer z Face to Face). Details are available on the association's website and social media.
They also run a biweekly podcast, “With Myasthenia Gravis Over Coffee” (PL: Z Miastenią przy kawie), which had special weekly episodes in June. The podcast is available on Spotify, YouTube, and Apple Podcasts.
Website: https://miasteniagravis.pl
more informations or pictures here:
ROMANIA
The Romanian MG Patients Association launched an initiative called “Medical Dialogues” for MG Awareness Month, sharing multiple videos with special messages to mark the occasion. On their social media, the association shared a message from Dr. Sorin Bivolaru, a pulmonologist and friend of the organization. They also hosted a webinar, “Questions and Answers About MG,” where Dr. Crisanda Vilciu participated, providing explanations about new therapies and addressing patients’ questions.
Several monuments were illuminated.
Website https://miastenie.ro
SPAIN
The Ames association prepared an awareness campaign called ‘#AtletasDesconocidos’ (The Unknown Athletes), The campaign focuses on people affected by myasthenia, presenting them as true elite athletes in the shadows who work to achieve their goals and beat their own records. It recognizes the spirit of self-improvement in the face of the physical and psychological limitations of the disease, which turn basic activities such as holding something or shopping into feats of strength.
Through this strength-based approach, it spreads the word about what it is like to live with Myasthenia by comparing their daily achievements with sporting milestones, such as climbing a mountain or running the 100-meter dash.
This has been done through posters in local and high-speed train stations in the peninsula and three spots.
It also includes a challenge that consists of filling a glass of water while blindfolded, a task that, in a symbolic way, speaks to us of the difficulty of performing small everyday acts. Just as this simple activity is complicated when blind, it is the invisibility of the disease that makes it difficult to recognize people with myasthenia. This challenge is still active.
It also features 5 interviews with real testimonials, including the protagonists of the campaign, who tell us firsthand what it is like to live with myasthenia.
For more information: https://miastenia.ong/atletas-desconocidos/
UK
Myaware launched an awareness campaign called MyMiles. Myaware members, supporters, volunteers, and staff set their own personal MyMiles challenge, raising money to fund future awareness campaigns for MG. The grand total of our MyMiles fundraiser was £8,116.
More information can be found here:
Myaware also hosted two webinars, which are available on their website. The first webinar, led by Dr. Channa Hewamadduma, covered fatigue and exercise in myasthenia. The second featured a team of myasthenia specialist nurses who answered a series of frequently asked questions.
Additionally, Myaware launched a puzzle campaign with MyWordle, engaging our members and providing helpful fact sheets on various myasthenia topics, such as steroids and antibodies (as shown in the pictures).
For more details, visit [Myaware Webinars](https://www.myaware.org/myaware-webinars?fbclid=IwZXh0bgNhZW0CMTAAAR1Z1AbmpGGVNqPHljdsgXkVekH2nru5n6MqhoLkxzGhzHCs7SFL6j2AmP4_aem_HAcdGk7tlFBFdYrwN2K90w).
All United for MG
Many European associations participated in the "All United for MG" coalition, running an awareness campaign together.
Launched in February 2023, our coalition brings together patient organizations and representatives from various European countries, united by the vision of a world where every individual with myasthenia gravis (MG) is understood, supported, and equipped to live their best lives despite the burden of the disease. The All United for MG Coalition issued a political Call for Action at the European Parliament in Brussels, presenting clear recommendations to the European Commission, the European Parliament, and European Member States. These recommendations include increasing knowledge, promoting cross-border cooperation, ensuring recognition of the disorder, raising public awareness, providing resources, and establishing centers of expertise.
For more details, visit the website:https://allunitedformg.eu/
This month, EUMGA participated in an insightful Myasthenia Gravis webinar hosted by EAMDA. We extend our heartfelt thanks to their team for the excellent organization and for inviting us to collaborate on this event. We were privileged to receive the latest medical updates from Dr. Francesca Cortese and to hear impactful perspectives shared by our secretary, Dimitris Zaftis. As June is Myasthenia Gravis Awareness Month, this collaboration underscores the critical importance of working together to advance our collective goals.
