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Make Your Wishes Known

The saying “not making a choice is making a choice” is especially true when it comes to making future plans for yourself or your child with a neuromuscular disease. If you don’t document your wishes for unforeseen circumstances or health emergencies, choices that are important to you might be made by others.

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Happy (Virtual) Camper

For Lily Ruta, 12, the 2020 virtual MDA Summer Camp offered one of her favorite activities — arts and crafts — plus an added bonus: connecting with kids like her all over the country.“After the first day of camp, Lily was so excited to talk to me about another child she met with CMT [Charcot-Marie-Tooth disease] type 1A who has a mom with CMT, too — same as us — and who wears braces, too. She also found a friend who loves the same book series,” says Lily’s mom, Melissa, who also lives with CMT.

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Are Vaccines Safe?

Vaccines are big news these days, but what exactly are they?Typically given as a shot, vaccines are an important tool to help prevent people from getting sick with or dying from preventable diseases. Different types of vaccines work in different ways, but they all cause you to develop special cells, or antibodies, that help your body fight a specific disease.

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New Research Channels for Myotonia Congenita

Myotonia congenita is an inherited myopathy that prevents affected individuals from relaxing certain muscles after contracting them. The disorder causes muscle stiffness but not atrophy or shrinkage. On the contrary, it often leads to larger, stronger muscles.There are two types of myotonia congenita: Becker disease and Thomsen disease. The Becker type is inherited as an autosomal recessive trait, meaning it is produced when both parents contribute a defective gene. Becker is the more common and more severe form of the disease. It generally shows up between ages 4 and 12, though in rare cases it may occur as late as age 18. Symptoms tend to worsen over time.

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Plan for a Bright Future

Josie Badger, DHCE, CRC, has used everything that life has handed her, including her disability, to pursue her dreams. Diagnosed with congenital myasthenic syndrome (CMS) at age 11, Josie now relies on a ventilator, power wheelchair, and 24-hour care. While many would see such challenges as a roadblock to pursuing an occupation, she has used them to fuel a career she is passionate about: advocating for disability rights.

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Affordable Accessibility at Home or On the Go

Whether converting a van for wheelchair access, modifying a shower, or widening doorways, maximizing accessibility is at the top of the to-do list for many individuals and families living with neuromuscular disease. However, the cost and the difficulty of planning these changes keep many people from checking those items off their list.

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Disability… or Superpower?

When I Google the definition of the word “disability,” this is what is returned: a physical or mental condition that limits a person’s movements, senses, or activities. Period. End of story. That’s all they have to say about that.But I have my own definition of disability. I define it as an opportunity to learn or heighten skills like positivity, determination, problem-solving, and about a billion others. It is a differentiator. (Who wants to be like everyone else, anyway?) It is an opportunity to do hard things and show the world the ease with which you can pull them off. It is an opportunity to laugh at the surprising and ridiculous things that occur daily. And it is a tool you can employ — just by existing and being who you are — to impact people around you with lessons on compassion, kindness, and open-mindedness.

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Creativity and Adaptability

As the novel coronavirus pandemic forced people to stay home and brought job loss or economic instability to many, a snapshot of the neuromuscular disease community shows examples of creativity and adaptability in the face of unexpected challenges. In three stories, members of our community share how they handled the pandemic’s financial impact.

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2020 Reader Photo Contest Winners

Congratulations to Julie MacIntyre of Millville, NJ, our Lasting Impression Photo Contest winner.Julie, 32, was three months post-heart transplant when she and her boyfriend, Barry, went parasailing during a weekend trip to Ocean City, NJ, in 2017.“It was the first time I realized that I can do things now that I wasn’t able to for a really long time,” says Julie, who lives with limb-girdle muscular dystrophy (LGMD). “It was one of the best experiences I’ve had, even to this day.”

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Clinical Trials During COVID-19

As novel coronavirus infections and deaths continue to climb across the United States, so do concerns about the success of more than 100 clinical trials in amyotrophic lateral sclerosis (ALS), Duchenne muscular dystrophy (DMD), spinal muscular atrophy (SMA), and other neuromuscular diseases.These anxieties range from the ability of pharmaceutical companies to conduct valid, verifiable trials in the midst of a pandemic to worries that the US Food and Drug Administration’s (FDA’s) focus on COVID-19 will take attention away from rare genetic disorders.

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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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