A 501(c)(3) advocacy organization dedicated to globally raising awareness of the rare neuromuscular diseases known as Limb-girdle muscular dystrophy (LGMD).

worldwide
Joined June 2015
Our website has become the Information Hub 4 the LGMD community worldwide! 💚 The website has a feature where it can be translated in multiple languages?
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As muscle weakness progresses, an individual w/LGMD may experience a change in their posture. Scoliosis refers to an abnormal side-to-side curvature of the spine; & an abnormal front-to-back curvature of the lower spine is known as lordosis. 💚 LGMD-Info.org
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Don't miss out on this one-of-a-kind, inaugural 2022 Girdie Limelight Ornament! Your purchase will support the LGMD Awareness Foundation’s mission. lgmdawarenessornament.orderp… Pricing includes shipping to US
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Patient Registries are "essential to rare disease research & the ability to develop a functional understanding of the number of people living with LGMD." ~ Louise Rodino-Klapac, PhD, Executive VP & Scientific Officer at Sarepta Therapeutics lgmd-info.org/.../internatio…...
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The name "LGMD" comes from the fact that the disease causes muscle weakness primarily in the hips & shoulders. The shoulder 'girdle' is the bony structure that surrounds the shoulder area & the pelvic 'girdle' is the bony structure surrounding the hips. LGMD-Info.org
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#LGMDawareness can spread much faster with more individuals, from all parts of the world, through re-posts, likes, and shout outs on social media! 💚 Remember, whether you are a long-time community member, or new to the scene...#TogetherWeAreStronger #IAMLGMD
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The severity, age of onset & features of limb-girdle muscle dystrophy vary among the many sub-types of LGMD and may be inconsistent even within the same family. Signs and symptoms may first appear at any age and generally worsen with time, although in some cases they stay mild.
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Keeping warm can be a challenge regardless of the weather or season. Being cold is in part often related to decreased mobility and the fact that the muscles are not contracting as much therefore resulting is reduced circulation of blood.
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LGMD Fact #37: Symptoms and progression of Limb-Girdle Muscular Dystrophy (LGMD) disorders vary among patients of the same sub-type, or even within the same family. 💚 To learn more about LGMD, please visit our website: LGMD-Info.org #LgmdAwareness #LgmdFacts
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The muscles most affected by LGMD are generally those closest to the body (proximal muscles), such as the shoulders, upper arms, thighs, and pelvic area. Over time, the individual with LGMD loses muscle bulk and strength. * Please SHARE this post to help raise awareness of LGMD!
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NOVEMBER IS NATIONAL CAREGIVERS MONTH Caregivers play a vital role in the lives of many individuals living with limb-girdle muscular dystrophy (LGMD). Caregivers are often spouses, parents, siblings, children, other family members friends &/or an employee.
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Happy Halloween 💚 Give a "TREAT" today! Consider donating to organizations and foundations that support limb-girdle muscular dystrophy (LGMD) research. For a list of international LGMD organizations, visit lgmd-info.org/resources/lgmd… #LGMDawareness #TogetherWeAreStronger
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LGMD Fact #33 A new nomenclature (naming system) for LGMD was developed during the 229th ENMC workshop in Naarden, The Netherlands in 2017. To learn more about LGMD, please visit our website: LGMD-Info.org #LgmdAwareness
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The Speak Foundation publishes a quarterly publication focused on LGMD, which is free to the community. The Speak Foundation has chosen to highlight this disease community and their hope is to produce a research magazine for years to come. thespeakfoundation.com/limb-…
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Most people diagnosed with LGMD can think, see, hear, and feel sensations as well as those without muscular dystrophy. Unfortunately, LGMD2S is one of the rare forms of LGMD in which some cognitive impairments have been associated.
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Involuntary muscles are muscles that contract without conscious control, & are found in walls of internal organs such as stomach, intestine, bladder, and blood vessels (excluding the heart). *** Please SHARE this post to help raise awareness of LGMD!
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Voluntary muscles, skeletal or striped muscles, refer 2 muscles that are within a person's control and are generally attached 2 the skeleton. The voluntary muscles most commonly affected by LGMD are those closest to the body: shoulders, upper arms, thighs & pelvic area.
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LGMD is an orphaned disease therefore lacks funding for research. An orphan disease means it affects fewer than 200,000 people nationwide. There is no cure but every year science is moving closer 2 a treatment bc 2 the scientific community & orgs who fund their research efforts.
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n the US, the Lantern Project and Detect Muscular Dystrophy offer free genetic testing for LGMD. For more information about the Lantern Project: perkinelmergenomics.com/.../… For more information about Detect Muscular Dystrophy: invitae.com/en/detect-muscul…
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People w/LGMD may have difficulty rolling over in bed, getting dressed independently or raising a glass to take a sip of a beverage. Typically the earlier the onset of the disease the more severe the symptoms over time. The speed of progression varies between people.
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