Santos “JR” Ortiz hadn’t always dreamed of becoming a fire fighter. He didn’t play on fire trucks as a kid, or even know much about fire departments. But when he was in his late 20s, a friend in the Boston Fire Department started talking about the job, and JR took notice. When that friend dropped . . .
School creeps up on you! At first you look at your three-and-a-half months on the calendar and marvel at the expansive possibilities, but here I am three months later and I’ve done maybe three quarters of what I wanted to get done. It’s not to say that I’ve been lounging around, although there has been . . .
Reagan Imhoff, 14, is a former MDA National Ambassador (2014-2015) and a current camper at MDA Summer Camp in Wisconsin. Reagan, who lives with spinal muscular atrophy (SMA), thoroughly enjoys MDA Summer Camp, and she was excited to connect with current MDA National Ambassador Faith and share perspectives on what it’s like to stay at . . .
An older gentleman came up to me once. I had just been on TV for the Jerry Lewis MDA Labor Day Telethon talking about how facioscalpulohumeral muscular dystrophy (FSHD) affects my facial muscles and my ability to really smile and show my teeth. The gentleman put his hand on my shoulder and said with good . . .
If I could describe the 2019 MDA Clinical & Scientific Conference in Orlando, Fla., with one word, it would be “massive” — but fortunately, I have an entire blog post to share my thoughts on this impactful event. The sense of scale I experienced began before I even entered the actual conference. On the eve . . .
When getting acquainted with something new, you can toe-test or you can jump. As for my newly appointed MDA National Ambassador role, attending the inaugural MDA Clinical & Scientific Conference was, no doubt, the best kind of canon ball. Though I have been around the scene locally for decades, this was my first time at . . .
Since the early 1950s, not long after the Muscular Dystrophy Association’s formation, America’s young people living with muscular dystrophy and related neuromuscular diseases have stepped forward to share their stories, raise awareness of the need for treatments and cures for rare diseases, and represent MDA’s mission with humanity and grace. More than 40 MDA National . . .
MDA’s first-ever combined Clinical & Scientific Conference kicked off today at the Hyatt Regency Orlando in Florida. MDA President & CEO Lynn O’Connor Vos and MDA Chairman of the Board Dr. R. Rodney Howell opened the event. “MDA is proud to convene this esteemed group, and we are grateful that you have joined us for . . .
On March 29, fire fighters from departments throughout the northeast gathered at Mohegan Sun Casino in Connecticut for MDA’s annual Fill the Boot Camp event. The goal of the one-day gathering is to provide fire fighters with the training and information needed to have a successful Fill the Boot season and to celebrate the accomplishments . . .
Spring 2018 has been an exceptionally busy time for National Ambassador Justin Moy. After being named 2018 MDA National Ambassador in March, Justin traveled to Japan with members of his school (with his MDA Camp Counselor serving as his care attendant). He also had several artistic endeavors this spring, exhibiting his artwork at a local . . .