TWIN LAKES, Wis., Sept. 30, 2020 /PRNewswire/ — Today as the 6th annual “Limb Girdle Muscular Dystrophy Awareness Day” is celebrated worldwide, LGMD Awareness Foundation, Inc. is proud to announce their formation as a 501(c)(3) non-profit advocacy organization dedicated to globally raising awareness of the rare neuromuscular diseases known as Limb Girdle Muscular Dystrophy (LGMD). In collaboration with other LGMD foundations, their focus is to provide curated educational information and resources, available on LGMD-info.org, for the global LGMD community and public. By increasing awareness of and advocating for individuals living with LGMD, the new nonprofit organization will draw attention to this rare and understudied disease.
Carol Abraham, President and Founder of LGMD Awareness Foundation, Inc., has been living with LGMD type 2A (also known as LGMD2A or LGMDR1 Calpain 3-related), a form of Limb Girdle Muscular Dystrophy, since symptoms appeared at age 5. For the past 6 years, Carol has been coordinating LGMD Awareness Day which is recognized worldwide annually on September 30.
LGMD is a general term used to describe a group of genetically inherited neuro-muscular diseases. Under the umbrella of LGMD there are more than 30 identified sub-types. Each LGMD subtype is caused by a different gene mutation. Individuals with LGMD experience progressive weakness and wasting of the muscles closest to their body (proximal) such as the shoulders, upper arms, pelvic area and thighs. The unrelenting nature of the disease often results in the individual becoming dependent upon a power wheelchair for mobility and requiring assistance with most activities of daily living (bathing, dressing, grooming, meal prep, ambulating, etc.). Presently, there is no cure for this rare progressive and degenerative disease. And as an orphan disease, funding to advance vital research is significantly lacking.
Issues of importance to the LGMD community are genetic testing and identification of sub-type, support services to individuals and families coping with complex medical needs, the promotion of innovative medical research and product development, and insurance practices that assure patient access to medically necessary therapies. The LGMD Awareness Foundation, Inc. hopes that by increasing awareness of LGMD, individuals living with this progressive debilitating disease will have an easier time accessing genetic diagnoses, care and treatment.
For more information and to join us in our efforts, visit our website at: www.LGMD-Info.org
LGMD Awareness Foundation, Inc.
Carol Abraham, President
SOURCE LGMD Awareness Foundation, Inc.