At MDA, we begin 2016 with families at the heart of our mission, literally with a heart representing them in our refreshed logo design. As we continue to fight with and for individuals with neuromuscular diseases — and the families who love them — we are excited to introduce new offerings and enhancements to help the kids and adults we serve live longer and grow stronger. This year, you will see a number of new and improved services to help provide better care and accelerate progress for our families:
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Joseph (Joe) Akmakjian, who was diagnosed with type 2 spinal muscular atrophy (SMA) when he was 15 months old, will turn 25 this year. In 2015, to celebrate his 24th birthday and doubling his life expectancy, he didn’t have the standard cake and ice cream with friends and family. Instead, he and 11 friends went skydiving to mark the occasion. Akmakjian was securely strapped to his skydiving instructor, wore a neck brace, and his arms were restrained across his chest. As he got ready to feel the wind on his face at 120 miles per hour, he shouted, “YOLO!” short for “You only live once.”
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American author, speaker and salesman Hilary Hinton “Zig” Ziglar once quipped, “You can have everything in life you want if you will just help enough other people get what they want.” For Mike Rowlett, these words are more than a nice sentiment; they are a personal philosophy that he lives by every day. And he credits that ethos with helping him achieve what he calls “a blessed life” with his wife, Beverly, and their blended family.
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Life is certainly full of surprises, isn’t it? Just when you think you’ve figured things out, you round a curve and — surprise — you hit a detour!Being diagnosed with ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig’s disease, in 2012 at age 55 was a most unwelcome detour, to put it mildly. We were not completely taken by surprise since it had been clear something was wrong with me for quite some time. When tests and clinical observations eventually ruled out everything else, we were faced with the awful truth: I had a disease that would take away my mobility, my independence and, eventually, my life. Scientists are working hard to find answers. But as I write this, there is no effective treatment or cure for ALS.
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The reward of giving back isn’t something 23-year-old Brandi Hawkins focuses on as she embarks on a career in social work. She just wants to help people. “There are so many people out there who are in need of special resources that aren’t aware of how much the system can assist them,” she explains. “Social workers tend to be a voice for those in need.”
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Eric Cook, who has limb-girdle muscular dystrophy (LGMD) and uses a power wheelchair, no longer struggles to pick up the TV remote or his glasses when he drops them on the floor. Instead, the 57-year-old retired engineer relies on his service dog, Dusty, to help him with these and other needs. In total, Dusty knows and responds to 40 different commands for everyday tasks like turning on a light switch, pushing an elevator button or opening the refrigerator door. When Cook begins to slump in his wheelchair, he even has a command for Dusty to gently nudge him back into an upright position.
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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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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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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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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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At MDA, we take a big picture perspective across the full spectrum of neuromuscular diseases to uncover scientific and medical breakthroughs that accelerate treatments and cures. The power in our research approach is that we can often apply learnings from one disease to progress in others to bring urgently needed answers to our families. Take a look at what's happening in research and clinical trials for Winter 2016.
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