quest.mda.orgQuest Magazine | Muscular Dystrophy Association

Give Search MDA.org SearchI Will Donate Today Our Story About MDA Our Impact MDA History FAQs Our Team MDA Leadership Meet Our PartnersNational Ambassadors Careers Resources Press Room Financials Quest Magazine Art Collection Contact Us Care & Services I Will Donate Today Care Centers About MDA Services MDA Care Centers Meet Your Team Your Visit Family Seminars MDA Engage Events MDA Resource Hub National Resource Center Request Services Community Resources Community Education Outside Organization Programs & Information MDA Summer CampYoung Adults ProgramSummer Camp MDA Summer Camp Become a Camp Volunteer Apply for Camp Science & Research I Will Donate Today Our Approach About MDA Research Grants at a Glance Creating a New Therapy What We’ve Achieved MOVR Data Hub Clinical Trials Finder Tool For Researchers Our Research Program Funding Opportunities Contact our Research Team MDA Annual Conference MDA Venture Philanthropy For Clinicians Clinical Trials Finder Tool MDA Annual Conference Medical Education & Resources Get Involved I Will Donate Today Participate Get Involved Participate in an Event Become a Volunteer Volunteer Resources Advocate Donate Make a Donation Matching Gifts Legacy Gifts Product Donations Partner Become an MDA Partner Meet Our Partners Fire Fighters for MDA Support an ALS event About Neuromuscular Diseases I Will Donate Today About Neuromuscular Diseases Full List of Diseases Amyotrophic Lateral Sclerosis (ALS) Charcot-Marie-Tooth Disease (CMT) Congenital Muscular Dystrophy (CMD) Duchenne Muscular Dystrophy (DMD) Emery-Dreifuss Muscular Dystrophy Endocrine Myopathies Metabolic Diseases of Muscle Mitochondrial Myopathies (MM) Myotonic Dystrophy (DM) Spinal-Bulbar Muscular Atrophy (SBMA) Spinal Muscular Atrophy (SMA) Our Blog Search Donate Search MDA.org Search Close Caregivers Daily Living Education Employment Health Care MDA Programs Parenting Research Resources Staying Active Technology Latest Editions Quest Issue 4, 2019 View PDF Featured Articles Quest Issue 3, 2019 View PDF Featured Articles Quest Issue 2, 2019 View PDF Featured Articles 2019 Conference Edition View PDF Featured Articles Recent Quest Articles A Good Beginning: Newborn Screening Early diagnosis and treatment for neuromuscular diseases that can be treated is crucial, as the disorders are progressive and, in many cases, fatal. Spinal muscular atrophy (SMA), for example, is the leading genetic cause of death in infants. While only a few years ago there were no disease-modifying therapies for SMA, today there are multiple lifesaving treatment options on the market. Read More The Importance of Genetic Testing Kelly Berger, 31, of Cincinnati, spent most of her life chasing a diagnosis. When she was 3, her parents noticed that, although she reached physical milestones for her age, she did them in unusual ways. For example, to step up, she pushed off her thighs with her hands, and she preferred crawling on stairs to walking them. Her parents took her to a neurologist and, after bloodwork, an electromyography (EMG), and a muscle biopsy, she received a diagnosis of spinal muscular atrophy (SMA) type 3. That was in the early 1990s, when fewer types of neuromuscular disease were understood. Read More Living, Not Suffering I often hear people say that I suffer from muscular dystrophy. I don’t like this use of the word suffer.” I am living my life to the fullest, and don’t feel like I am suffering at all.I may need to ask for help sometimes or adapt to my surroundings, but I can always be myself. Coming to that realization took years of hard work and some tough life lessons. Read More 2019 Lasting Impression Photo Contest Winners Congratulations to Brent Gillespie of Benton, Ark., our photo contest winner.This photo, taken in the summer of 2019, captures Brent, 43, trying adaptive wakeboarding for the first time on Lake Ouachita, a popular spot for water sports in Arkansas. The men wakeboarding with him are volunteers from Wake the World, a nonprofit offering water sport experiences for people with disabilities, wounded veterans, and others. Read More Outside the Lab Michael Lo Sapio, father of Mikey, 7, and Reid, 5, proudly admits that he’s pushy. Both his boys live with Duchenne muscular dystrophy (DMD), which causes progressive muscle degeneration and weakness beginning in early childhood. People with DMD typically live to their late teens or early 20s.These facts are grim, but being pushy means not accepting the statistics without a fight. For Michael — and many people living with neuromuscular diseases — one way to push back on the numbers is by participating in research. Read More Wheels Like Mine I am a mom. I have spinal muscular atrophy (SMA). My son has SMA, too. Because SMA is a genetic disorder, these statements may not seem surprising. It wouldn’t be all that strange for a person with SMA to pass on their condition to their child. But that is not our story. Our journey to family is more convoluted and, dare I say, even more beautiful than most would guess. Ours is a story of love and adoption and beauty where others see tragedy. Read More What’s the Toy Story? Barbies were a favorite toy of young Jessica Hetzel, despite the fact that the dolls looked nothing like her. It took until February 2019, when Jessica was 17, for Mattel to release a Barbie in a wheelchair. I’m not playing with Barbies these days,” says Hetzel, who has spinal muscular atrophy (SMA). But I was excited to see they finally did it.” Read More More Than a Game A typical weekend day for me starts off with my partner or caregiver feeding me breakfast (Cheerios with milk on the side) and ends with me falling asleep to an episode of Cutthroat Kitchen.” In between these moments, I game with friends from all over the country. Gaming has been part of my life since the 1980s. I grew up playing on all the major gaming systems and had a constant slew of competitors in my brother and neighborhood friends. But as congenital muscular dystrophy (CMD) affected my body over the years, and as game controllers became more complex, I started having trouble keeping up with my peers. Read More Pushing Limits After six long days, I’m tired. It’s the middle of the night, I’m wearing five layers of clothing and I know I have several more hours to go in the frigid air before I reach the 19,341-foot summit. Mom believes in you. Dad believes in you. All of your friends and family believe in you. You are strong,” are the words that echo through my mind with every step. Read More The State of Gene-Targeted Therapies The first full day of MDA’s Clinical & Scientific Conference included a highly anticipated session that took a deep dive into gene-targeted therapies. Experts discussed how gene-replacement, gene-silencing and gene-editing therapies are being studied and tested for treating patients with a variety of neuromuscular diseases (NMDs). Read More 1 2 3 4 5 6 7 8 9 … next › last » Recent Quest Issues Quest Issue 4, 2019 Quest Issue 3, 2019 Quest Issue 2, 2019 2019 Conference Edition Quest Issue 1, 2019 Quest Fall 2018 Quest Summer 2018 Quest Spring 2018 Quest Winter 2018 Quest Fall 2017 Quest Summer 2017 Quest Spring 2017 Quest Winter 2017 Quest Fall 2016 Quest Summer 2016 Quest Spring 2016 Quest Winter 2016 Quest Categories Caregivers Daily Living Education Employment Health Care MDA Programs Parenting Research Resources Staying Active Technology Manage your Quest subscription 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 services are only available in the U.S. Request Services Media Careers Donate Contact Us Muscular Dystrophy Association National Office 161 N. Clark, Suite 3550...