Caregivers, simply put, are the people who make my life happen. And hiring and managing caregivers is essential to being an adult with SMA living life on my terms. But, no matter how many times I have to do it, hiring new personal care attendants (PCAs) is one of my least favorite things. Let me tell . . .
Editor’s note: Sarah Coglianese and her family are featured in this video, in which she talks about living life to the fullest for her daughter, Scarlett, despite ALS. For more visit Sarah’s page on our Live Unlimited hub. She also wrote this piece on her feelings about ALS Awareness Month. May is ALS Awareness Month, . . .
Can we talk? Well, no, actually, we can’t talk… because I can’t really talk. Oh, I can make sounds, but those sounds seldom form themselves into recognizable words. Only my husband and son have the patience to try to understand me, and they’re pretty darn good at it! My nurses try to guess, but . . .
We’re thrilled to announce a new partnership that will bring MDA’s resources in front of The Mighty‘s wide-reaching readership. MDA will also now have a growing home page on The Mighty where people can get involved with us. The Mighty is a story-based health community focused on improving the lives of people facing disease, disorder and disability. More than . . .
For the past 10 years, MDA families have benefited from a potent, if nontraditional, ally in their fight to end ALS: coffee. Yes, the seemingly simple beverage that millions of people across the country rely on each morning to start their days has helped raise nearly $2 million for ALS research and family support services. . . .
Dear MDA family and friends, At yesterday’s all-day FDA advisory committee meeting for the promising drug eteplirsen, MDA stood shoulder to shoulder with our sister groups, research and clinical experts, and most importantly you, our families. We couldn’t have been more proud to raise our voice on behalf of the thousands of Duchenne muscular dystrophy . . .
Today, MDA’s Executive Vice President & Chief Medical and Scientific Officer Dr. Valerie Cwik spoke during the FDA’s Advisory Committee hearing to review eteplirsen, under development by Sarepta Therapeutics for the treatment of some forms of Duchenne muscular dystrophy (DMD). Good afternoon. I am Dr. Valerie Cwik, and I am pleased to be here today on behalf . . .
The FDA has made available background materials and webcast information for the advisory committee meeting to review eteplirsen on Monday, April 25. To view the complete set of background information including a meeting agenda, meeting roster, committee roster and briefing information, visit 2016 Meeting Materials, Peripheral and Central Nervous System Drugs Advisory Committee. The Center . . .
When Kevan Chandler and his friends decided to go backpacking in Europe this summer, they expected a few dozen friends and family members to be interested in their plans. Little did they know their adventure would become international news. The media response to the trip has been “awesome” according to Kevan. He and his travelling . . .
Reid Wilson always wanted to be a race car driver. At 7 years old, Reid got to meet his hero, professional racer Jeff Gordon. When the little boy told Gordon about his dream, the NASCAR legend had nothing but encouragement. “Go for it,” he told Wilson. He did. Now a NASCAR driver himself and a . . .
