Limb-Girdle Muscular Dystrophy Awareness Day is an annual collaborative effort to globally raise awareness of individuals living with limb-girdle muscular dystrophy (LGMD). The tenth annual Global “LGMD Awareness Day” will be held on September 30, 2024.
For far too long, limb-girdle muscular dystrophy has been an orphaned rare disease that has not gotten the attention of researchers, health care providers, or the general public that it deserves. Even many patients living with LGMD have limited knowledge of their LGMD diagnosis and progressive disease process.
Our goal is to globally draw attention to this group of rare neuromuscular diseases, which can impact the lives of many from childhood through adulthood, as LGMD occurs in all parts of the world and among all ethnic groups.
There is great strength in awareness, understanding, and unity. The LGMD community demonstrates global connectivity each year when we campaign together and gain recognition for limb-girdle muscular dystrophy (LGMD). With over 30 different genetic types of LGMD, the act of collaborating globally makes us stronger than we could ever be alone.
We invite all individuals with LGMD, family members, organizations, health care professionals, researchers, drug developers, public health organizations, and any association with an interest in LGMD to join together and help us increase awareness of these rare and progressive neuromuscular diseases.
Whether you are a long-time community member or new to the scene, your participation in our LGMD Awareness Day activities is important. Awareness can spread much faster with more individuals, from all parts of the world, sharing their spirit remotely through reposts, shout outs, and snaps of the LGMD Awareness sticker to your favorite platforms. There is power in action.
We believe that through social media, participation, and awareness will have a broader reach and impact. To keep abreast of our global initiatives and the educational components of LGMD Awareness Day, please join us on Facebook. We are providing educational posts on LGMD, featuring LGMD “Spotlight Interviews,” and posting information that is pertinent to the entire community. Together, we can make a difference for those living with limb-girdle muscular dystrophy.
EVERYONE INVITED TO SUPPORT LGMD AWARENESS DAY!
We encourage individuals, patients, family members, patient organizations, health professionals, researchers, drug developers, public health organizations and the general public to participate. The more people involved – the better! As individuals with limb-girdle muscular dystrophy (LGMD) we live in different geographic areas, speak different languages and observe different customs.
There will be a number of ways to participate as September 30th nears. Globally we can work together to increase awareness of LGMD through the sharing of personal experiences, educational materials, and social networking. We encourage you to be creative in finding ways to celebrate this global event in your region.
Visit our “Awareness Day Initiatives” page for details on promoting local awareness in your community.
Visit our “Awareness Day Resources” page to download promotional tools to assist you in raising awareness of LGMD.
Volunteer to be featured in an upcoming “LGMD Spotlight Interview”
Remember, by telling your story and sharing your experiences, you help others understand what it is like to live with LGMD. You play an important role in this global awareness campaign. Reach out to your local media reporters, including TV, radio, newspapers, online reporters, and bloggers, and give them information about LGMD Awareness Day and your particular story.
Our Advocacy Partners
