In addition to the information on our website, here is a list of sites with complementary information. There are many groups on Facebook that facilitate the exchange of practical information between individuals with LGMD2I.
Do you know other sites that should be added to our list? please send us a message using the subject line “Useful Sites”.
Information and Awareness
Limb Girdle Muscular Dystrophy Awareness Day
https://www.facebook.com/pg/LGMDAwarenessDay/about
An annual collaborative effort to raise awareness for Limb Girdle Muscular Dystrophy (LGMD). LGMD Awareness Day is held every year on September 30th.
The admins are Carol Abraham and Brad Williams.
The information ‘hub’ for the LGMD community
LGMD Awareness Day, Spotlight Interviews, Proclamations, LGMD Facts, Organizations, LGMD Resources… this is a great resource with very diverse information about LGMD in general. You must visit this site!
The admin is Carol Abraham.
NMD United
NMD United is a peer-led and driven non-profit organization with a mission that stems from a unique and personal body of knowledge and experience, which reflects what it means to live with a neuromuscular disability (NMD). This organization offers small independent living micro-grants and a wealth of resources that focus on obtaining/maintaining a high quality of life from a virtual and accessible platform. They serve over 2000 adults living with neuromuscular disabilities, like LGMD2I, from around the world.
The Board President is Emily Wolinsky.
Muscular Dystrophy Coalition
https://www.facebook.com/groups/1107117842672579
This group shares scientific advances with the LGMD community. Gene-editing technologies is at the center of the discussion because they have the potential to cure genetic disorders like muscular dystrophies.
The admin is Dan Pope.
Muscular Dystrophy Subtype Unknown
https://www.facebook.com/groups/498452196969988
A place for those with any undiagnosed subtype Muscular Dystrophy to share history, symptoms and other information with the goal of getting a genetic diagnosis.
The admin is Mark Barnett.
Neu-Adventures
https://kneuen.wixsite.com/neu-adventures/lgmd
The site was created by Kourtney Neuenswander who has LGMD2B to tell the world not only about her disease, but about her life. There is interesting information for people with any forms of LGMD.
Social Groups
LGMD2I Group on Facebook
https://www.facebook.com/groups/LGMD2I/about
This is a closed/private group; only members can see the posts. You have to contact the administrator to be invited in. The group was initially started for those with LGMD2I, but now welcome people with any type of Muscular Dystrophy.
The admins are Lacey Woods, Kelly Brazzo, and Dan Pope.
Parents and Family of LGMD2I
https://www.facebook.com/groups/1419906754916266
This is a support group page for any parents or family members of patients who are diagnosed with LGMD2I. Please post comments, complaints, suggestions or whatever is on your mind with regard to raising a child or living with a family member with this rare and progressive disease.
The admin is Kelly Brazzo.
Limb Girdle 2I Dansk Gruppe on Facebook
https://www.facebook.com/groups/186890368186410
This Network is for Danish LGMD2I patients and their relatives and for anyone with an interest in helping the Danish LGMD2I community.
The admins are Jeanette Nørregaard Strøm and Alexander Stang Asmussen.
Limb Girdle Muscular Dystrophy 2i (LGMD2i) Community Page
https://www.facebook.com/groups/460327480975091
This is a support group for people with LGMD2I.
The admins are Lauren Victoria and Chuck Cole.
German LGMD2I Group on Facebook
https://www.facebook.com/jan.bahlmann
Jan Bahlmann founded this group as a way to exchange experiences with other affected people in Germany. To join this restricted group, you will need an active Facebook account. You will have to contact Jan Bahlmann directly via private message and request to join the group.
Blogs
Meghan Klatt is from Alberta, Canada, and writes about her experiences, from diagnosis to living with LGMD2I.
Melanie Bo was diagnosed with LGMD2I and writes about wheelchair-accessible travel to places all over the world.
Justin and Sarah share their experience of traveling in many different countries and solving the challenges of traveling with a chronic and incurable condition. In their May 16, 2019 post, they featured Melanie Bo, a person with LGMD2I that has written about tips to traveling with muscular dystrophy (the Post).
Initiatives (Visit the lgmd-info website)
State proclamations:
One way to raise awareness is through the annual State Proclamation Initiative. Official state proclamations are formal public declarations from the Governor that state that limb girdle muscular dystrophies are rare diseases that cause muscle wasting. In the proclamation, the State adopts the 30th of September as the LGMD awareness day. Usually, these proclamations need to be requested every year. Contact Dr. Jean-Pierre Laurent if you are interested in being involved.
Spotlight Interviews
https://lgmd-info.org/spotlight-interviews
The spotlight interviews is an initiative to help create a stronger community and raise awareness. In these brief interviews, you can help others understand what it is like to live with LGMD by telling your story and sharing your experiences. Stories like yours are more powerful in helping other people living with the same condition than anything else they can read on the net. By being strong and sharing your story, you will help others be strong and feel part of a community.
You will find interviews of people living with LGMDs, researchers working on LGMDs, and public foundations focused on LGMDs.
Lime green for LGMD!!
https://lgmd-info.org/lime-green-for-lgmd
The community adopted Lime Green as the color for Limb Girdle Muscular Dystrophy (LGMD) Awareness! Visit this website for available resources and products.