In July, days before the U.S. House of Representatives and Senate went into recess, bipartisan legislation was introduced in both houses to strengthen research into pediatric diseases.

MDA is conducting a survey designed to assess the experiences of parents in the United States whose babies underwent newborn screening at the time of birth, with an eye toward the future possibility of newborn screening tests being recommended for certain neuromuscular diseases in which therapy development is advancing rapidly.

When I was 7 years old, I stomped up the front porch steps into our modest eastside Detroit home. With tears in my eyes and head bowed toward the ground, I related to my mother how some friends did not pick me to join the impromptu baseball game organizing along a strip of grass across the street. Once again, real estate on the Louisville slugger had vanished, and I had not ended up a member of either team. As I described the situation, my mother’s usually cheerful expression began to fade.

Six to be profiled on MDA SHOW OF STRENGTH

MDA's annual Labor Day weekend telecast is coming right up.

Renamed MDA SHOW of STRENGTH, this three-hour entertainment special will have a new look, feel and format — for details, see MDA Show of Strength.

Six individuals have been selected to help tell viewers about life with neuromuscular disease. (Note: Click on photos to expand; rollover for cutline.)

In describing our MDA community, I’ve often referred to us as being much like a human body. Our sponsors and volunteers are our backbone, and the families we serve are our heart. Without our sponsors and volunteers, we would collapse; without our heart, we would cease to exist.

MDA is continuously measuring the pulse of our MDA community and at all times is centered on the heart of our effort — you. Here are a few of the ways that MDA is actively seeking your input.

Below are highlights of two recent studies in spinal muscular atrophy (SMA), a disease in which the nerve cells (motor neurons) that control muscles in the spinal cord die, causing progressive weakness in the voluntary muscles.   

Decision making about preimplantation genetic diagnosis (PGD) is a complex, multiphase process for couples, a new study has found. Understanding it, the investigators say, may be helpful to prospective parents who know they're at risk for transmitting a genetic disorder, and to the professionals who advise them.