Overview

What are inherited and endocrine myopathies?

Muscles affected by inherited and endocrine myopathies
Myopathies can cause weakness or stiffness in all of the body's voluntary muscles. Because muscles support the body's posture, muscle weakness can lead to skeletal deformities.
Description: 

MDA leads the search for treatments and therapies for inherited and endocrine myopathies. The Association also provides comprehensive supports and expert clinical care for those living with inherited and endocrine myopathies.

In this section, you’ll find up-to-date information about inherited and endocrine myopathies, as well as many helpful resources. This information has been compiled with input from researchers, physicians and people affected by the disease.

Researchers Exploring Disability Perceptions

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 lab's Disability Identity Project is being headed by principal investigator Adena Rottenstein, a doctoral candidate in psychology.

The study closes the week of Aug. 22, 2011.

Muscle Disease Quality-of-Life Study Seeks Participants

Researchers at the University of Michigan are seeking 30 young adults, ages 18-29, who have had symptoms of certain forms of muscular dystrophy or myopathy since birth, to complete an online survey that asks about their perceived quality of life and level of independence.

The study also is recruiting 30 adults with no neuromuscular disease.

Results will be used to identify ways that counselors and therapists can address specific factors considered important by people with congenital muscle diseases (present at or near birth).

MDA Awards More Than $14 Million in Research Grants

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.

Dating Poker

Dating. It’s a touchy subject — especially for people with disabilities.

Which isn’t to say it should be avoided. Approached cautiously, with a strong sense of self-identity — yes. But never avoided. That way leads to living alone with 40 cats, all named Muffin.

So, what can you do?

Dating is a lot like playing poker. But instead of asking poker champ Phil Gordon for advice, here are some words of wisdom from three adults with neuromuscular diseases who are players in the real-life game of dating poker.

The Pros & Cons of Genetic Testing

The Roozebooms
For Rob and Sharla Roozeboom, getting a
new diagnosis helped in family planning.

Getting a Correct Diagnosis in Neuromuscular Disease

*Note: In the print edition of Quest, this article was titled "Rounding Up the Usual -- and Not So Usual -- Suspects."

The scene is familiar to everyone who watches crime dramas. The safe has been opened, and the hotel guests' jewelry and other valuables are missing. What happened, and when, and who's responsible?

The Heart Is a Muscle, Too: Part One

Cardiac problems are common in several neuromuscular disorders. They can be quite serious, particularly in Duchenne and Becker muscular dystrophy (DMD and BMD). In this, the first of a two-part series, we'll explore cardiomyopathy, the type of heart problem that's found most often in DMD and BMD and also occurs in some other neuromuscular conditions. (Read Part 2 of this series.)

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