Independence

Living with diminishing physical ability means losing some independence, but it doesn’t have to mean less adventure

posted on April 1, 2014 - 9:25am
Kristal Hardin Independence. It is unique to the human experience. People fight for it. Toddlers to teens demand it. It is the way we live. So when a debilitating disease threatens to take away the thing we cherish the most — our independence — most of us channel our inner “Rocky” and refuse to go down without a fight. 

MDA's 2014 Clinical Conference on neuromuscular disease brings together health professionals from across the country and focuses on improving lives through excellence in care

posted on March 7, 2014 - 3:01pm
"Optimizing Care: Improving Lives Through Clinical Excellence" is the theme of the 2014 MDA Clinical Conference, which takes place March 16-19 at the Hyatt Regency in Chicago. A secondary theme — "I am progress" — also will be in evidence, referencing the crucial role that MDA clinic team members nationwide have in providing expert medical care in neuromuscular disease and identifying new...

A strong support system makes it possible for one gifted student with Duchenne muscular dystrophy to pursue his dreams

posted on January 9, 2014 - 9:31am
Quest Winter 2014
Raymond Walter isn’t your typical teenager. Having graduated from high school at age 14 and from college at 18, he’s already knee-deep in his doctoral studies in mathematics and physics as a Distinguished Doctoral Fellow and a National Science Foundation Graduate Research Fellow at the University of Arkansas at age 19. 

Taking more than care

posted on January 9, 2014 - 9:23am
Quest Winter 2014
Without the help of my paid caregivers, I can’t get out of bed. I put my life in their hands every day, and that’s why it was such a slap in the face when one of my aides stole my work laptop. It’s been well-documented that individuals with disabilities are victimized by crime, including burglary/theft, at much higher rates than the rest of the population. In fact, we’re often targeted...

Two couples affected by Becker muscular dystrophy discuss the challenges and joys of making a relationship work when one partner has a chronic disease

posted on November 19, 2013 - 11:05am
Quest Vol. 20, No. 4
After nine years of courtship, my partner Richard and I are discussing The Future. Children, marriage and home ownership are now notching out deeper spaces in our daily dialogue. Like many couples, we’re both scared of The Future. We’re concerned we won’t be fully equipped for what may come — those ripples that may make life a little more difficult. We’ve already experienced hardships that we’ve...

Advocacy is needed to pass amendments to this landmark bill that will expand muscular dystrophy research and health care efforts

posted on October 3, 2013 - 9:12am
Quest Vol. 20, No. 4
Times have changed dramatically since 2001, thanks to the passage that year of the Muscular Dystrophy Community Assistance, Research and Education (MD CARE) Act — a bill designed to advance research and health care for all forms of muscular dystrophy. Among the changes:

The daylong, MDA-supported conference held Aug. 24, 2013, focused on all aspects of Becker muscular dystrophy; videos are now online

posted on September 11, 2013 - 12:15pm
The 2013 MDA-supported Becker Muscular Dystrophy Conference, held Aug. 24 in Baltimore and co-hosted by MDA and Johns Hopkins Medicine, was "high-energy" with "phenomenal" presenters, says Annie Kennedy, MDA's senior vice president of advocacy, who attended and helped organize the meeting. Some 130 people attended in person and many more, including some from outside the United States, attended...

MDA advocacy efforts are focused on accelerating research advances and treatment discovery while expanding the resources available to those affected with the disease

posted on August 29, 2013 - 10:37am
Today, research discoveries are bringing us closer than ever to effective therapies for spinal muscular atrophy (SMA) and other neuromuscular diseases. Medical knowledge of neuromuscular disease is broadening, and children and adults with these diseases are living longer, fuller lives. But significant challenges remain.