Recent Quest Articles
Landmark Decision Brings Hope for Continued Progress, Momentum in 2017
An important win for all individuals and families living with muscular dystrophy, ALS or one of the related neuromuscular diseases that MDA fights occurred Sept. 19, 2016.The U.S. Food & Drug Administration (FDA) granted accelerated approval to eteplirsen (brand name Exondys 51) for the treatment of some forms of Duchenne muscular dystrophy. This is an outcome MDA dreamed of decades ago when we first invested in the research to identify the cause of DMD and then took the risk to be the first to invest in a breakthrough exon skipping research project that led to development of this drug (see Progress Now). It is the first of what we know will be many disease-modifying drugs for DMD.
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Champion the Cause
Are you excited about the progress we are making in bringing strength, independence and life to individuals with neuromuscular diseases and their families?This holiday season, please remember to put MDA on your list. Please join us in supporting the important work being done to find research breakthroughs across diseases that accelerate treatments and cures; care for kids and adults from day one at more than 150 MDA Care Centers; and empower families with services and support, including equipment assistance, support groups and MDA Summer Camp for kids.
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Finishing Strong at MDA Muscle Walk
Every year in hometowns across America, MDA Muscle Walk participants of all ages and abilities make their way through a 1- to 3-mile wheelchair friendly course for a good cause. But this is more than a fundraising walk. Here are excerpts from the Strongly blog about why people participate in this life-changing event.
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From Self-Denial to Self-Acceptance
I was diagnosed with spinal muscular atrophy (SMA) at 18 months. I was pretty fortunate that my doctors said that I looked strong, and the quality of my life would be determined by every milestone I surpassed. However, they couldn’t foresee how I’d react to my own disability throughout life. When I was young, all I wanted was to be what I considered “normal” or “typical.” I wanted to be like everyone else. With that said, I was blessed with two parents and other special people in my life who always told me I was beautiful, I could be anyone I wanted to be, and my disability never had to define me because I could define it. But my own voice said differently.
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Progress Now Fall 2016
In August, MDA awarded nearly $7 million in new research grants, supporting 25 new research projects around the world to accelerate treatments and cures. With 41 grants awarded earlier this year, MDA’s investment in new neuromuscular disease research projects totals more than $17 million for 2016.The new research projects underway are expected to build learnings and create positive outcomes that cross disease borders and impact the greater neuromuscular disease landscape.
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Running Wild
By the end of this summer, Abel Alejandrino had already run two marathons and an ultramarathon in support of MDA. He had covered more than 100 miles — and he was just getting started. Alejandrino intends to run at least two more marathons this year as part of MDA Team Momentum, including the Bank of America Chicago Marathon in October and the Dallas Marathon in December.
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Living Social
Months after Staci Hayes gave birth to her daughter, she began to suspect her extreme exhaustion was not normal. “How I felt went beyond [the idea that] I have a newborn and I’m tired,” says Hayes. After consulting with doctors and undergoing a range of testing, Hayes received a diagnosis of myasthenia gravis (MG). At the age of 40, every aspect of her life changed. Her 20-year career as a nurse ended, her marriage fell apart, and she became a single parent with a 3-year-old child.
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The Heart of Care
When a couple vows to share their lives — whether or not they express that commitment before an authorized officiant — there’s a traditional phrase that holds particular pertinence when one partner is both mate and primary caregiver for the other. It’s the line about loving one another for better, for worse, for richer, for poorer, in sickness and in health.
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Independent Pro
Like many of us, 25-year-old Lauren Carter’s path to her chosen career took a few turns along the way.“I was definitely one of those students all throughout high school who was constantly changing my mind about what I wanted to do with my life,” Carter says. She considered becoming a doctor or a lawyer, as well as a cook, even though she admits to being terrible at cooking.
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Trial Run: Is Participating in a Clinical Trial Right for Me?
Clinical trials are research studies conducted to determine whether a medical strategy, treatment or device is safe and effective for use in humans. They can test medical products including drugs and devices, help discover more information about a disease, or evaluate procedures or behavioral changes such as diet or exercise.
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