Health Care

Power Chair Medicare Benefit Threatened

Comment count: 1

Power wheelchair users urged to speak up to preserve first-month purchase option

posted on July 10, 2009 - 9:32am

People who receive a power wheelchair through Medicare may lose the option to buy the chair immediately, under a proposed change to Medicare rules being considered by committees dealing with healthcare reform in the U.S. House of Representatives. The proposed rule change would eliminate the first-month purchase option for power wheelchairs provided by Medicare, requiring all Medicare...

Pompe Disease: FDA Approves Lumizyme

Comment count: 1

The Food and Drug Administration has OK'd the first U.S. treatment specifically for late-onset Pompe disease

posted on May 25, 2010 - 12:34pm

The U.S. Food and Drug Administration (FDA) has approved U.S. sales of the enzyme-replacement drug Lumizyme, the first treatment in the U.S. specifically for late-onset Pompe disease.

Lumizyme Now Commercially Available for Pompe

Comment count: 1

"Lumizyme has stopped the progression of my disease," says one of first to receive the drug since the FDA granted commercial approval

posted on June 21, 2010 - 4:25pm

Monique Griffin of Orlando, Fla., was one of the first in the nation to receive the commercially available treatment Lumizyme for acid maltase deficiency (AMD, or Pompe disease).

Efficient System Developed for DMD Newborn Screening

Comment count: 1

Researchers have developed a new, two-step process for screening newborn babies for Duchenne MD and possibly other muscular dystrophies

posted on March 2, 2012 - 9:37am

Update 5/21/12: A podcast on this topic is now available; see Podcast Explores Newborn Screening for DMD.

Doctors Talk Heart to Heart

Comment count: 2

Pediatric cardiologists and other experts at an MDA-sponsored meeting exchanged information and planned studies regarding the heart in DMD and BMD

posted on January 28, 2011 - 2:10pm

Although it’s clear that people with Duchenne and Becker muscular dystrophies should be closely monitored and treated by heart specialists, doctors and researchers at a recent MDA-sponsored meeting say there still are many unanswered questions about optimal clinical care of the DMD/BMD-affected heart.

New DMD Care Recommendations

Comment count: 17

After a year of planning, new recommendations for physicians caring for DMD patients have been released

posted on December 3, 2009 - 4:23pm

A comprehensive set of clinical care recommendations for the diagnosis and management of Duchenne muscular dystrophy (DMD) is now available to medical professionals and families. The complete recommendations, in printable PDF format, can be read here:

Health Care Changes Coming

Comment count: 73

The new health care reform law has many provisions of particular interest to people with disabilities

posted on March 23, 2010 - 1:08pm

The newly signed Patient Protection and Affordable Care Act, a dramatic reform of the health care system, contains numerous benefits for families living with neuromuscular disease. The legislation, approved this week by both Houses of Congress, has features taking effect over the next several months that have implications for people with disabilities. These include expansion of insurance...

Feedback Analytics

Housing		Independence
Personal Stories		Psychological Factors
Service Animals		Safety
Legislation and Policy		Taxes

College And Beyond		Learning Disabilities
IEP and 504 Plans		MDA Summer Camps
Transition Programs

Diagnosis and Genetics		Drugs
Insurance and Costs		MDA Clinics
Medical Procedures		Exercise and Sports
Nutrition

Adolescents and Young Adults		Children with an MD
Parents with an MD		Siblings

Research Administration		Endocrine Myopathies
Metabolic Diseases of the Muscle		Motor Neuron
Muscular Dystrophies		Neuromuscular Junction
Other Myopathies		Research Updates
General Research		Diseases of the Peripheral Nerve
Inflammatory Myopathies		Clinical Trials and Studies