Parenting: Moving and Making New Friends

On two different occasions, when Aaron came home from MDA summer camp and asked what was new, I’ve blurted out the news that we were moving. Now, years later, it’s a joke, but back then Aaron swore he would never go to camp again.

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.

Through the Looking Glass with FSH Dystrophy Researchers

In 1990, Sara Winokur was a doctoral student in the laboratory of John Wasmuth, a professor of biological chemistry and a prominent researcher in genetics at the University of California at Irvine.

It was an exciting time in genetics. The genes that, when mutated (flawed), cause diseases, were rapidly being identified. Among the first, in 1986, had been one for Duchenne muscular dystrophy.

To Register or Not to Register

It seems as if everybody wants information about you these days. Try to get that rebate the salesman promised on your new computer, and the company wants to know how old you are, how much money you make and whether you went to college.

Phone surveys want to know what you think of your congressional representative, whether you’re planning to sell your house and what radio stations you listen to.

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?

When Form Meets Function: Exploring Surgery to Restore Muscle Power in FSH Dystrophy

The trouble started for Claire Walker when she was in kindergarten, when her physical education teacher noticed that she couldn't do sit-ups like the other children and that her back seemed "lopsided." Claire's parents took her from their home in Louisiana to see Yadollah Harati, an MDA-affiliated neuromuscular disease specialist at Baylor College of Medicine in Houston.

There, she learned she had facioscapulohumeral (FSH) muscular dystrophy, a muscle-wasting disease that mostly affects the muscles of the face and upper body but can also affect the back and legs.

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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