LGMD Awareness Foundation, Inc.

#TeamLGMD was strong at the 2025 MDA Clinical and Scientific Conference in Dallas, TX this week. ?? What an amazing event for education, advocacy, and networking! #TogetherWeAreStronger #LGMDawareness #CureLGMD

LGMD Awareness Foundation is pleased to be participating in the 2025 MDA Clinical & Scientific Conference in Dallas, TX. ?? If you are attending, we invite you to visit our booth in the Advocacy Pavilion. We look forward to seeing you soon. #LGMDawareness #TogetherWeAreStronger #CureLGMD

Attention individuals with LGMD2C/R5, LGMD2D/R3, or LGMD2E/R4 and/or caregivers in the U.S., Puerto Rico, the U.K., or Canada.

Tomorrow is "International Lime Day" ?? Of course, Girdie, our LGMD Ambassador, is excited. ?? This is a perfect opportunity to share your favorite lime recipe and shine a light on LGMD Awareness! #LGMDawareness #LimeGreen4LGMD #LimeDay

International Wheelchair Day, observed on March 1st each year, is a global event dedicated to celebrating the transformative role of wheelchairs in the lives of individuals living with a disability. Established in 2008, this day acknowledges the positive impact of wheelchairs and promotes accessibility and inclusivity worldwide. Wheelchairs are more than mobility aids; they are instruments of independence, enabling individuals to engage in education, employment, and social activities. However, many individuals face challenges due to inaccessible environments and societal barriers. International Wheelchair Day serves as a reminder of the ongoing efforts needed to create inclusive spaces for all. A wheelchair provides dignity, confidence, and control. It allows users to decide where to go, how to spend their time, or how to participate in society. Many people who use wheelchairs work, attend school, raise families, and contribute to their communities in countless ways. Having access to a suitable wheelchair is crucial for independence and mobility. Wheelchairs play a vital role in the lives of many living with limb-girdle muscular dystrophy (LGMD). #LGMDawareness #TogetherWeAreStronger

Today, we join the world in celebrating Rare Disease Day, which occurs on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. ?? All forms of Limb-Girdle Muscular Dystrophy (LGMD) are classified as a rare disease! A rare disease, also called an orphan disease, is any disorder that affects a small percentage of the population. Although the disease may be rare, patients and families share many common struggles. ?? Rare Disease Day 2025 is an opportunity to be part of a global call on policymakers, healthcare professionals, and services to better coordinate all aspects of care for rare disease patients and families. Researchers also need patients and rely upon their participation to ensure research is meaningful. Rare disease research is not done for the sake of creating knowledge; the knowledge generated is only useful if it is translated into real benefits for patients. ?? Today is a great day to begin increasing awareness of LGMD! Remember, by telling YOUR story and sharing YOUR experiences, you help others understand what it is like to live with LGMD. #RareDiseaseDay #LgmdAwareness #CureLGMD #TogetherWeAreStronger

In honor of Rare Disease Day, the LGMD Awareness Foundation is proudly offering COMPLIMENTARY REGISTRATION for LGMD patients, family members, and caregivers to attend the 2025 International LGMD Conference in Orlando, Florida, on July 18-21, 2025. Join Girdie and register for the International LGMD Conference TODAY, Friday, February 28th! Use Promo Code: RARE2025 Register at https://lnkd.in/g3QeJ6PT Please note: Offer valid through February 28, 2025, at midnight EST. Offer is limited to the first 50 ticket requests. #LGMDawareness #TogetherWeAreStronger

Did you know? ?? Genetic testing is considered necessary to confirm a diagnosis of limb-girdle muscular dystrophy (LGMD) because the various subtypes of LGMD can present with very similar clinical features, making it difficult to differentiate between them without genetic analysis; this allows for a precise diagnosis of the specific LGMD subtype involved. While clinical evaluations like muscle weakness assessment and muscle biopsy can provide clues, they alone may not be enough to definitively identify the specific LGMD subtype. Genetic testing allows for the identification of the specific gene mutation causing the LGMD, which is crucial for accurate diagnosis, prognosis, genetic counseling, and potential future treatment options tailored to the specific subtype. ? For a list of international genetic testing resources, please visit https://lnkd.in/gds_WSeV #LGMDawareness #TogetherWeAreStronger

Did you know that February is “National Heart Month”? Limb-girdle muscular dystrophy (LGMD) is primarily a disorder that impacts voluntary muscles, although the heart can be affected in some forms of LGMD. This is one reason why getting genetic confirmation of an LGMD diagnosis is important. In LGMD, cardiac (heart) problems can take different forms — two types that are common in some LGMD subtypes are weakness of the heart muscle (cardiomyopathy) and abnormal transmission of signals that regulate the heartbeat (conduction abnormalities or arrhythmias). The heart should be monitored for complications, particularly if the patient has (or is likely to have) a subtype of LGMD in which cardiac involvement is common. Cardiac complications in LGMDs can be treated in various ways, for example, by medications or devices (such as pacemakers or defibrillators). According to the American Academy of Neurology (AAN) guidelines for LGMD diagnosis and treatment, LGMD subtypes with associated cardiac involvement include LGMD1A, LGMD1B, LGMD1D, LGMD1E, LGMD2C–K, LGMD2M–P, Becker muscular dystrophy (BMD), Emery-Dreifuss muscular Dystrophy (EDMD), and myofibrillar myopathies (MFM). Muscular dystrophy patients with cardiac involvement often do not have symptoms such as chest pain, pedal edema, or palpitations. Often, cardiac involvement is only identified with cardiology testing. Obtaining genetic confirmation of a specific LGMD diagnosis will allow physicians to monitor for possible cardiac complications and provide optimal symptom management. ? For genetic testing resources, please visit https://lnkd.in/gds_WSeV #LGMDawareness #CureLGMD #TogetherWeAreStronger

As we begin 2025, we are excited to announce a major milestone in our efforts to expand the reach of our awareness and advocacy materials for individuals living with Limb-Girdle Muscular Dystrophy (LGMD) worldwide. You can now access our website resources in 12 new languages: Arabic | Chinese | French | German | Italian | Japanese | Korean | Polish | Portuguese | Russian | Spanish | Turkish This is another critical step toward growing and fulfilling our mission in 2025: to amplify awareness, advocate for individuals impacted by LGMD, and ensure easier access to diagnosis, care, and treatment pathways. The attached video demonstrates how to access the 12 new languages on our website: https://www.lgmd-info.org. Try it out today!