MDA leads the search for treatments and therapies for mitochondrial myopathies. The Association also provides comprehensive supports and expert clinical care for those living with mitochondrial myopathies.
In this section, you’ll find up-to-date information about mitochondrial myopathies, as well as many helpful resources. This information has been compiled with input from researchers, physicians and people affected by the disease.
Researchers at the Psychology of Disability Lab at the University of Michigan in Ann Arbor are exploring the social identity of people with disabilities through a short, anonymous, Web-based questionnaire.
The Muscular Dystrophy Association has awarded 44 grants totaling $13.5 million to support research efforts aimed at advancing understanding of disease processes and uncovering new strategies for treatments and cures of muscular dystrophy and the more than 40 other diseases in the Association’s program.
The new grants were reviewed by MDA’s Scientific and Medical Advisory Committees, and approved by MDA’s Board of Directors at its December meeting.
A study to determine the early features of late-onset Pompe disease (acid maltase deficiency) is seeking 250 adults who have a clinical diagnosis of unclassified limb-girdle muscular dystrophy (LGMD), an uncertain diagnosis of other forms of muscular dystrophy (MD),or an unclassified myopathy(muscle disease)who do not carry any biochemical, metabolic, enzymatic, serologic (blood), molecular or pathologic diagnostic marker that confirms their diagnosis.
MDA has awarded 38 new research grants totaling more than $14 million and covering more than a dozen neuromuscular diseases.
MDA's Board of Directors met in Los Angeles July 16, where it reviewed and approved the new grants based on recommendations from the MDA Scientific and Medical Advisory Committees. Grants were scored and recommended for approval based on the capabilities of the applicant, the scientific merit of the project, and the proposal's relevance to developing treatments for the disease. The effective start date for all grants was July 1, 2010.
MDA National Vice President Jeni Stepanek will be a guest on the November 2 broadcast of ABC's "Good Morning America" to promote the release of Messenger: The Legacy of Mattie J. T. Stepanek and Heartsongs, an inside look at the life of her famous son, who served as MDA’s National Goodwill Ambassador from 2002-2004.
Scentists at Oregon Health and Science University in Portland have developed an assisted-reproduction technique that has the potential to allow mothers with mitochondrial myopathies and other mitochondrial diseases to virtually eliminate the risk of passing on the disease to their children.