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Strength in Numbers: ALS Allies

“If I had all my physical strength and everyday freedoms from before being diagnosed with ALS, I would want to give one more bear hug and kiss to each of my girls. Being able to physically pick them up and squeeze them in my arms is what I miss most in life. MDA and its wonderful, compassionate and helpful staff are an essential and integral part of my life, as well as others like mine." — Keith Gawrick, father of three daughters who is living with ALS

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Camping Unlimited

There are so many noble reasons to be an MDA Summer Camp volunteer, and Elizabeth Barrett can easily chat up every last one. As a six-year veteran volunteer at the St. Louis-area MDA Summer Camp, now held annually at Pinecrest Camp in rural Madison County, she immediately launches into how MDA’s life-changing summer camps give kids with muscular dystrophy and related life-threatening diseases that limit muscle strength and mobility one blissful week when they can play and live unlimited in an environment without barriers.

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Progress Now Spring 2016

Researchers are looking for people with ALS to participate in a phase 1 clinical trial, sponsored by Biogen and Ionis Pharmaceuticals, to test the experimental drug Ionis-SOD1Rx. Ionis-SOD1Rx is designed to block production of flawed SOD1 protein in people with ALS caused by defects in the SOD1 gene. It is administered by intrathecal injection, in which a small needle is inserted into a space in the lower back below the end of the spinal cord in a medical procedure commonly referred to as a “lumbar puncture.”

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Investing in the Future

Dr. Chris Rosa, vice chairman of MDA’s Board of Directors and the University Assistant Dean for Student Affairs at the City University of New York, was among the speakers on hand to help launch MDA’s new brand in January. In his remarks that day, Dr. Rosa shared the story of his own journey with muscular dystrophy, starting with his diagnosis at age 9.  

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Keeping Families at the Center of Our Mission

One of the most enjoyable privileges of my role is visiting with MDA families we proudly represent and are committed to serving. You are at the heart of everything we do at MDA. You’ve heard us say that, but what does it mean to families like yours?  Earlier this year, MDA launched a revitalized brand to better reflect the voices and needs of families and a bold plan to enhance the research, care and support we provide to you. This includes the experience and care you receive at MDA Care Centers (formerly called MDA Clinics) in hometowns across America.

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Searching for Answers Across Diseases

The $11 million commitment, MDA’s largest such award in three years, underlines MDA’s dedication to investing in research across diseases with the expectation that increased understanding in one disease will inform progress and lead to research and medical breakthroughs in other disease spaces. 

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Web Exclusive: Personal Finance Q&A with Michael Morris

In Investing in the Future, Quest explores the idea that financial planning can be complicated, and that it pays to do your research and learn about your options. To help build upon the information provided in Investing in the Future, Michael Morris, a recognized field leader on financial capability for people with disabilities, provides some answers to commonly asked questions related to the topic of personal finance.

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From My Mother: Surviving and Thriving in a Family Ravaged by Genetic Disease

Editor’s note: Author Darcy Leech is an instructional technology coach in Great Bend, Kan. She has published From My Mother, a memoir on losing her mother and brother to myotonic muscular dystrophy, from which this chapter is excerpted. She lives with her husband, Daniel, and their 4-year-old son, Eli, and 5-month-old daughter, Hannah. She enjoys technology, volunteering with service groups and writing for healing. Leech participated in her first MDA Muscle Walk in April for the Wichita MDA office and had an amazing experience.

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More than a Number

I am a statistic. In 2012, at 57 years of age, after almost two years of worsening symptoms, I was diagnosed with ALS. Being a white male at my age, in many ways I was the “typical” ALS patient. Of course with a disease like ALS, there really is no such thing as a typical case. Each of us is unique, each of us is different. This disease attacks men and women, young and old, of every race and religion. This disease attacks rich and poor alike. And yet it is a rare disease, so rare as to be deemed “orphaned,” at least until the Ice Bucket Challenge.

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Camp Connection

For Sylvia Colt-Lacayo, a high school freshman with muscular dystrophy from Oakland, Calif., attending her first MDA Summer Camp at age 14 was a revelation. “My favorite thing wasn’t even an activity, although all the activities were great,” she says. “It was the fact that it was a week where I never felt insecure about my wheelchair and the different things that happen with my body. I felt comfortable because everyone around me had similar issues or knew what it was like to deal with those issues. The only way I can describe it is basically for a week I get to accommodate the world, the world doesn’t have to accommodate for me.”

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Strike a Pose

Editor’s Note: Always consult with your MDA physician and MDA Care Center team before beginning any kind of exercise program. Twenty-eight-year-old Chelsea Singer is not the typical yoga instructor. Her feet are deformed as a result of contractures and stiffened joints. Her hands shake, her knees frequently dislocate, and she lacks sensation in her extremities. Diagnosed with Charcot-Marie-Tooth disease (CMT) at age 11, Singer grew up believing she was frail and found physical activity, such as hiking, painful. 

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Web Exclusive: Personal Finance Q&A with Michael Morris

From My Mother: Surviving and Thriving in a Family Ravaged by Genetic Disease

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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