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A Successful In-Person Conference

In mid-March, more than 1,000 people gathered in Nashville, Tennessee, for MDA's 2022 Clinical & Scientific Conference."It's a delight to meet again in person," said MDA President and CEO Don Wood, PhD, in a welcome address. "For many of you, it's the first time on a plane in two years."

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Leading the Quest for Change

For years, MDA has worked to empower people living with muscular dystrophy, ALS, and related neuromuscular diseases to reach their fullest potential. And while strides have been made through innovations in care, research, and advocacy, there is more work to do. So this year, we're going bigger. We're declaring 2022 the Year of Independence.

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A New Direction for Charcot-Marie-Tooth Disease

Charcot-Marie-Tooth disease (CMT) is not one disease but a spectrum of nerve disorders. It is named after the three physicians who first described it in 1886: Jean-Martin Charcot and Pierre Marie of France and Howard Henry Tooth of the United Kingdom. CMT affects the peripheral nerves that run through the arms and legs, connecting the brain and spinal cord to the muscles and sensory organs. It occurs in approximately 1 in 2,500 people.

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The Hidden Benefits of Volunteering

Blaine, a 6-year-old black lab, is assistance dog extraordinaire to Bella Andrade, 19, who lives with spinal muscular atrophy (SMA) and uses a power wheelchair. Receiving Blaine from the Minnesota nonprofit Can Do Canines in October 2017 was a life-changing gift for Bella. With a verbal command, Blaine will open a drawer, push a handicap door access button, or retrieve a dropped pen or smart phone.

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Positive Relationships

Trust. Honesty. Mutual respect. Affection. The key elements of a healthy romantic relationship are the same for all couples. When one or both partners have a disability, it can affect how they each approach daily tasks, but it doesn't change the need for constant give-and-take. For adults living with neuromuscular disease, building and nurturing positive intimate relationships may even be especially important, because there are unique dynamics due to physical limitations or the progressive nature of the disease. Fortunately, couples can rely on tried-and-true strategies for forming healthy relationships.

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Working Together

Anyone who lives with a neuromuscular disease that affects mobility knows that it often takes a village of caregivers to get through a week, let alone a day. For many people, personal care attendants (PCAs) provide a large part of that caregiving. PCAs are professionals who provide home care to people with disabilities who need assistance with daily living activities. This can range from helping them get ready for the day to helping them take medication to performing chores and errands.

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Family Inheritance

In genetics, inheritance doesn't refer to property or financial assets. It is the process by which genetic information is passed from parents to children. Most neuromuscular diseases are genetic disorders, meaning they are caused by changes in our genes. While these changes, called gene mutations or variants, often are inherited from parents, they don't always cause disease. For many neuromuscular diseases — and the number grows every year with continuing research — scientists have identified disease-causing gene variants. They also have been studying the inheritance patterns, meaning how a gene variant may be passed from one generation to another and how it might affect members of a family.

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View From the Top

Hiker Skye Lemmen raised funds for MDA while trekking the Pacific Crest Trail When Skye Lemmen, of Grand Rapids, Michigan, decided to hike the Pacific Crest Trail, she knew she wanted her endeavor to support MDA and the neuromuscular disease community. So, while hiking the approximately 2,650 miles of trail, which extends from the Mexican border to the Canadian border in the Western United States, Skye raised more than $5,000 for MDA through Donor Drive. Inspired by her dad, who lives with facioscapulohumeral muscular dystrophy (FSHD), Skye wanted to support MDA for the assistance her family has received over the years.

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Embrace Your Body

When MDA National Ambassador Keisha Greaves was diagnosed with limb-girdle muscular dystrophy (LGMD) as a college student at Framingham State University, in Massachusetts, her lifelong confidence in her body plummeted.Studying fashion design and merchandising made the situation especially tough. She was used to looking a certain way and following fashion trends that certainly didn't celebrate different kinds of bodies. At first, she didn't want to share what was happening — for example, she told people she was walking with a cane because of a sprained ankle. It wasn't until nearly four years after her diagnosis that she decided to acknowledge her condition publicly.

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MDA Q&A: Let's Talk

The MDA Resource Center is available to provide one-on-one support. Here, Resource Center specialists answer Quest readers’ questions. Q: How can I find a therapist who knows about mental health and living with neuromuscular disease? —Jeffrey, New York First, we applaud you for prioritizing your mental health. Because neuromuscular diseases are considered rare, it might be difficult to find a mental health professional who is familiar with a specific disease. We recommend looking for a therapist who has worked with people living with chronic health conditions. Consider asking if they are also willing to counsel your family members, as a neuromuscular disease can also affect loved ones in their own ways.

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MDA Resource Center: We’re Here For You

Our trained specialists are here to provide one-on-one support for every part of your journey. Send a message below or call us at 1-833-ASK-MDA1 (1-833-275-6321). If you live outside the U.S., we may be able to connect you to muscular dystrophy groups in your area, but MDA programs are only available in the U.S.

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