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Limb Girdle Muscular Dystrophy (LGMD) Awareness Day is intended to be an annual collaborative effort to globally raise awareness of individuals living with Limb Girdle Muscular Dystrophy.  The fourth annual “Limb Girdle Muscular Dystrophy Awareness Day” will be celebrated worldwide on September 30th, 2018.

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 neuro-muscular diseases which historically have not gotten the attention that they deserve.   Sadly, even many patients living with LGMD have had limited knowledge of their LGMD diagnosis and the progressive disease process.

Our goal is to globally draw attention to this group of rare neuro-muscular diseases which can impact the lives of many from childhood through adulthood as LGMD occurs in all parts of the world & among all ethnic groups.

We believe that through social media, the 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 LGMDSpotlight Interviewsand are also posting information that is pertinent to the entire community.

Everyone is 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.  As individuals with Limb Girdle Muscular Dystrophy (LGMD) we live in different geographic areas, speak different languages and observe different customs….we encourage you to be creative in finding ways to celebrate this global event in your region.

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.

 

“Together we are STRONGER”

 

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