Latest Editions
-
Quest Issue 2, 2022 -
Quest Issue 1, 2022 -
Quest Issue 4, 2021 -
Quest Issue 3, 2021
Recent Quest Articles
Access MDA Summer 2016
When Jessica Aviles’ son Gabe was diagnosed with Duchenne muscular dystrophy (DMD) in November 2015, it was a complete shock. “I literally knew nothing [about the disease,]” Aviles says. “I had to look it up in the parking lot.”Over the next six months, Aviles went from knowing nothing about DMD to heading the largest Muscle Walk team at the MDA Muscle Walk of Tampa Bay. Early on in her research, Aviles came across MDA and Muscle Walk and decided to get involved so she and her family could join and support MDA’s cause.
Read More
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
Read More
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.”
Read More
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.
Read More
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.
Read More
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.
Read More
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.
Read More
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.
Read More
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.
Read More
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.”
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.
