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Quest Issue 2, 2022 -
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Recent Quest Articles
Fashion Forward
Children and adults living with neuromuscular diseases often have to make a choice between fashion and function. Skinny jeans and tall lace-up boots may be all the rage, but items like those present plenty of challenges in terms of getting them on and then staying mobile afterward. Even regular jeans and sneakers can be a hassle, leaving many to simply don sweatpants and slip-on shoes, but self-esteem can take a hit as a result.
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Making Life Work for You
Life isn’t easy whether you are living with a neuromuscular disease or not. I recently came to the realization that there are four main strategies for being happy in my life and that enable me to make sure my life is working for me and my family. While there is no one-size-fits-all formula for achieving a happy life, I hope my experiences and the tips below may help provide some insight into how you can have a life that works for you, especially if you’re feeling like you’re not quite there — yet.
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Strength in Numbers: Focused on Families
Families are at the heart of MDA’s mission to help kids and adults live longer and grow stronger. Here is a snapshot of how MDA supported our families in hometowns across America during 2015. Cure 200 Number of current research projects funded by MDA 103 Number of research grants awarded in 2015, with a total commitment of more than $27.3 million
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Access MDA Winter 2016
Access MDA is a collection of MDA news, inspiring profiles about individuals and families living unlimited every day, and much more. Be an MDA Champion: Sign up to be an MDA volunteer today and make a difference for families where you live Families are at the heart of all MDA is doing to deliver its lifesaving mission. Every day, MDA relies on the support of its dedicated volunteers all across the country who volunteer in local offices, who lend their time and talents to MDA special events like MDA Muscle Walk and MDA Galas, and who commit one week every summer to help kids experience life beyond limits at MDA Summer Camp.
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Rest Easy
It’s a catch-22: Getting a good night’s sleep is an important way for people living with neuromuscular diseases to help maximize their health and well-being. But the physical symptoms of many of these diseases can themselves limit the restfulness of sleep. “We tend to overlook the importance of sleep; it’s so basic,” says Sharon Greenberg, an occupational therapist in the MDA Clinic at Seattle Children’s Hospital. “But getting good rest can be a real challenge for people with these diseases.”
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Changing Directions
I decided to go to business school because I wanted to propel myself into a new career in a new industry. Leaving the tech world for the life sciences field would be no easy transition, and I realized a master’s degree would be my best way to accomplish this goal.One of the key experiences in business school is the summer internship between the first and second year. It was imparted on me from Day 1 at Boston College that a summer internship is a necessary building block in order to land the right job after graduation. The company you intern for sometimes extends an offer after the internship, but at minimum it is great experience you can put on your résumé to show off to other employers.
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Swimming, S'mores and More
The excitement that surrounds MDA Summer Camp is evident from the energy and smiling faces of the campers. That’s perhaps especially true of first-time campers. For 10-year-old Axel Vazquez-Solis of Pennsylvania, who was diagnosed with Ullrich congenital muscular dystrophy in 2009, that excitement lasted all week long as he enjoyed the many pleasures of camp life — swimming, singing, meeting new people, having a friendly food fight and even taking motorcycle sidecar rides.
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My Brother's (or Sister's) Keeper
In a small Detroit apartment, Sam Barash, 32, lives with and cares for his 20-year-old, soon-to-be 21, sister, Angela Barash, who is living with myotonic muscular dystrophy and myasthenia gravis. For a year now, Sam’s been his sister’s primary caregiver, waking her every four hours for medication, fixing her meals, helping her get dressed and doing everything possible to make Angela comfortable.
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Progress Now Fall 2015
As part of an effort to refocus its research grants program, MDA began funding 36 new research and development grants, totaling nearly $10 million, on Aug. 1, 2015. The awards were made to researchers seeking to increase understanding of and find promising treatments and cures for muscular dystrophy, ALS and related neuromuscular diseases that limit strength and mobility.
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Holiday Cheer
As the autumn leaves start to fall, the holiday season is upon us. And between the hustle and bustle of decorating, shopping, food preparation and social gatherings, the holidays can be a source of increased stress. Anyone can feel overwhelmed this festive time of year, but for people living with neuromuscular diseases, managing the additional activities and expenses is crucial to maintaining mental, physical and financial health. Consider the following tips to help you plan ahead.
Read MoreMDA 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.
