Inside MDA Engage: Community, Connection and Practical Guidance for NMD Families

For families newly navigating a neuromuscular disease diagnosis, medical guidance from a care team often comes in short appointment windows, leaving little room for the kind of in-depth, unhurried conversation many families need. Marissa Lozano, M.Ed., director of community education at the Muscular Dystrophy Association, explains how MDA Engage Educational Events are designed to fill that gap, connecting patients and caregivers not only with specialists across disciplines like pulmonology, cardiology, nutrition and rehabilitation but also with peers who understand the journey firsthand.

In this interview, Lozano discusses the major transition points families face, from a new diagnosis to the shift from pediatric to adult care, and how bringing patients, caregivers, providers and industry together in one room can dissolve the isolation so many people with chronic illness describe. She also shares a moment that has stayed with her from an MDA Engage event, and what she'd say to someone who's hesitant to attend.

For families newly navigating a neuromuscular disease diagnosis, what makes an in-person event like MDA Engage different from the information they might already be getting from their care team or online?

Marissa Lozano, M.Ed.: What sets the Muscular Dystrophy Association's Engage Educational Events apart is the opportunity for real-time, unhurried conversations with patients, caregivers and experts who understand the neuromuscular disease journey firsthand. Care teams provide essential medical guidance, but appointment time is often limited. At MDA Engage, families can ask questions, explore topics in greater depth and connect with specialists across disciplines such as pulmonology, cardiology, nutrition and rehabilitation.

For families facing a new diagnosis, one of the most powerful aspects is meeting others who have already navigated many of the same challenges. Those peer-to-peer conversations often provide practical advice, reassurance and hope in a way that online resources alone cannot.

The program mentions guidance through “critical life transitions.” What are some of the biggest transition points for people living with neuromuscular disease (NMD), and how does that guidance actually show up at these events?

ML: People living with neuromuscular disease face many transitions, but two of the most significant are receiving a new diagnosis and moving from pediatric to adult care.

A new diagnosis often brings uncertainty and questions about what comes next. At MDA Engage, we address both the science of the disease and the practical realities of daily life. Attendees learn about topics such as maintaining independence, nutrition, exercise, insurance navigation and adaptive equipment, because these are the issues families tell us matter most.

For teens and young adults, the transition to adulthood can be especially complex. Decisions about college, employment, transportation, health care management and independent living all intersect with life with a neuromuscular disease. Teens approaching adulthood face many decisions, [such as] attending college, moving out, learning to drive, coordinating doctor’s appointments, and adding the challenges of living with a neuromuscular disease can make it a stressful time for families. Several of our MDA Engage Symposiums offer sessions specifically for teens and their caregivers to understand what's ahead and provide a road map to make that transition smooth and successful.

A lot of chronic illness communities talk about isolation. How does bringing patients, caregivers, providers and industry together in the same room change the way people process living with an NMD?

ML: Bringing patients, caregivers, providers and industry together in the same room validates the individual's experience in a way that no other setting can. Being able to meet someone else with your diagnosis face-to-face allows you to feel seen and heard. It dissolves the isolation and replaces it with community and purpose. Seeing with your own eyes that there is a whole network of people rallying together to give support, share resources and find answers is very empowering. It becomes a tangible feeling and can fundamentally change how someone views their future.

What's something you've seen happen at an MDA Engage event — a connection, a piece of advice, a moment — that stuck with you or changed how someone approached their care?

ML: There are many, but one story has stayed with me.

Several years ago, a mother and son traveled from Ohio to Atlanta to attend an MDA Engage event. The son shared the same neuromuscular disease as his father, who had recently died from complications. During the opening session, they met someone with the same diagnosis and even the same genetic mutation. They connected immediately.

Later, the mother told me that meeting that person gave her hope for her son’s future and helped her begin healing after the loss of her husband.

Moments like that are why these events matter. Every year, attendees tell us it’s the first time they've met someone with their diagnosis. We also hear stories of people changing how they approach their care after learning something new. In our postevent surveys, more than 84% of attendees report they plan to make a change in their care based on what they learned.

For someone who's hesitant to attend, maybe because they're newly diagnosed and not ready to be in a room full of other patients, or a caregiver who feels stretched too thin, what would you say to encourage them to go?

ML: I would tell them they don't have to dive in all at once. Come for an hour. Attend a session. Walk through the Resource Hall. Just see what's available.

We intentionally design MDA Engage to meet people where they are. If you're newly diagnosed and not ready to engage with others, that's OK. You can simply listen and observe.

The hardest step is often showing up, but that's usually where people discover they're not alone. At its core, MDA Engage is about hope and connection. We acknowledge the realities of living with neuromuscular disease, but we focus on empowering people with knowledge, practical tools and a supportive community that helps them move forward with confidence.