Twelve years ago, I became involved in the fight against muscular dystrophy and authored legislation to bring more attention to this terrible disease.  The Muscular Dystrophy Community Assistance, Research, and Education (MD CARE) Act was the first federal legislation to focus on muscular dystrophy and established targeted research programs at the National Institutes of Health.  Today, MD CARE still plays an instrumental role in strengthening efforts to understand and treat muscular dystrophy.

I am hopeful that Congress will take immediate action to ensure that this important research continues.  Earlier this month, I joined Sen. Amy Klobuchar (D-Minn.) in introducing bipartisan legislation to reauthorize MD CARE.  The act was reauthorized unanimously by Congress in 2008.

Making a Difference

It is encouraging how much has changed in just over a decade – since a fellow Mississippian stopped by my old office in the U.S. House of Representatives determined to change the fate of his son’s diagnosis with Duchenne muscular dystrophy.  This form of muscular dystrophy is the most common in children and so far has been 100 percent fatal. 

Before the MD CARE Act, families living with muscular dystrophy were told there was little hope for a better future.  Now, groundbreaking treatments and therapies are making a real difference in the lives and care of muscular dystrophy patients.

Recently, Sen. Klobuchar and I were able to visit with children diagnosed with muscular dystrophy and their families at an event with swimmer Ryan Lochte.  The 11-time Olympic medalist, who lost a family member to Duchenne, continues to help raise awareness about the urgent need for a cure.

Proven Success

We have good reason to be optimistic about the work ahead.  Research on muscular dystrophy has grown dramatically in recent years at universities and hospitals, leading to the development of dozens of potential therapies and standardized care.  Significant advancements have been made in improving the quality of life for children and adults with the disease, and more promising medical breakthroughs are within reach.  Since MD CARE was enacted in 2001, the average lifespan of patients with Duchenne muscular dystrophy has increased by about a decade.

More Work to Do

And yet, we still face challenges in making sure that effective drugs and treatments get to those who need them without delay.  Duchenne affects 1 out of every 3,500 boys in America.  The genetic disorder causes the rapid deterioration of muscle strength, resulting in serious medical complications in the heart and lungs.  Typically, those with Duchenne muscular dystrophy live until their late 20s.

There is no time to waste when it comes to combating a devastating disease like muscular dystrophy.  The clock does not stop for the children and adults who need access to cutting-edge therapies and treatments right away.  The 2013 authorization of the MD CARE Act would build on the progress we have made and move forward in addressing the most critical needs of patients, doctors, and researchers.  If the past 12 years are any indication, putting an end to muscular dystrophy is a goal we can achieve with continued support and focused research.

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