Amyotrophic lateral sclerosis (ALS), a rare neurodegenerative disease affecting approximately 1-2 per 100,000 people globally, has seen notable advancements in research and therapeutics. The ALS community, closely connected with other neuromuscular communities due to shared symptoms and biology, convened at the 2025 Muscular Dystrophy Association (MDA) clinical & Scientific conference in Dallas, Texas. Patient advocates, clinician experts, and researchers gathered to discuss the latest developments in drug development and clinical care.

A Beacon of Light: Sunny Brous’s Journey

Sunny Brous, an MDA Ambassador and patient living with ALS for 10 years, shared her experiences and insights. Brous discussed her transition from patient to advocate, emphasizing the importance of vulnerability, resource sharing, and connection within the ALS community. She also highlighted ongoing challenges in clinical trial access and celebrated the progress advocacy efforts have brought to the ALS landscape.

Being an MDA Partner: Connecting and Helping Others

Brous reflected on her decade-long journey since her ALS diagnosis, noting her transition into advocacy: Over that time, I’ve spent a lot of energy figuring out what I want, need, and expect from life. There was a pretty natural transition into thinking, how can I help others?

She emphasized the importance of meeting people where thay are and providing support without claiming to have all the answers. for me, it’s about meeting people where they are and letting them know that I don’t have all the answers either. I’m still learning, troubleshooting, and giving people space to just be human. Brous also acknowledged the challenges of maintaining a positive outlook, stating, One thing I’m not always great at is showing weakness or admitting to down days — but I try to remind people that I’m human too. It’s not all positive. There are days that suck, and that’s just part of the human experience, with or without disease.

The resources and community provided by MDA have been invaluable to Brous. Being part of the community, getting to know people, and having strong resources through MDA is huge.It’s great to be able to say, “Here’s what worked for me, but here’s what MDA’s resource guide says — let’s figure out what fits your life.” I love helping people troubleshoot and supporting them through that process.

The Power of Collaboration: Advocacy and Science

Brous highlighted the importance of conferences that bring together researchers, clinicians, and patients. She noted that these events help break down silos and foster crucial conversations. From my experience, it’s really easy at conferences to get tunnel vision — if you’re a researcher, you’re focused on your data; if you run a clinic, you’re managing staff and patients; and if you’re a patient, you’re focused on your daily life and options. conferences like this let those lines blur.

She emphasized the importance of candid discussions about the practical implications of scientific advancements.We can have conversations like, “I don’t really understand the science you’re talking about, but if what you’re proposing is going to cost me $300,000 out of pocket, that’s not realistic.” Having those candid conversations is so important — theory is great, but how does it actually translate into practice for patients?

The advocacy collaborative was especially impactful for Brous. Then there’s the advocacy collaborative — that’s where you really see the magic. I can walk into a room and say, “I have ALS, one of the major diseases under MDA,” but there are so many people there facing similar issues — equipment, caregiving, advocacy, funding — no matter what disease they have. We’re stronger together. Knowledge is power, and being in a room full of people who see problems and want to help make life more livable, even if not solvable, is so powerful.

The ALS track at the conference allowed for a deeper dive into the specifics of the disease. The ALS track gave me the chance to dive deeper into my specific disease. I’ll be honest, once the alphabet soup comes out, it’s over my head! But I can still pick up on the anecdotes, meet the researchers and clinicians, and reconnect with people I only see at these events. That’s what makes conferences like this so meaningful.

Brous underscored the broader relevance of these discussions, noting that disease affects everyone.We’re not getting out of this alive — none of us. Disease will touch us or someone we love at some point. Building empathy and understanding matters. Maybe it’s my muscles that don’t work, but there’s technology to help. I learned yesterday about someone with limb-girdle muscular dystrophy who regained some sensory function through therapy in his foot — that’s huge! She added, That may not happen for ALS in my lifetime, or even ever, but we’re so much further along than we were 75 years ago when MDA started.It’s remarkable to imagine what progress we’ll see in the next 75 years.

Community Strength and Progress

Brous reflected on the increased awareness and support for ALS since the Ice Bucket Challenge in 2014. Before September 2014, I didn’t know anything about ALS. like many people, I dumped ice on my head because of the Ice Bucket Challenge — I didn’t really know what ALS was.Six months later, I was diagnosed.

She acknowledged the role of social crowdfunding and online communities in providing support and resources. I feel fortunate to have been diagnosed during a time when the world was learning about ALS and when social crowdfunding was exploding. For whatever reason, I’m a slow progressor, so I’ve been able to see drugs and therapies develop that trace back to the awareness sparked by that challenge 10 years ago. As a millennial, finding community and support online was natural to me — and when COVID hit, it became the standard. Telemedicine, Zoom support groups, Zoom clinics — all of that made care and connection more accessible. Our community learned that technology can be trusted, and even clinical trials have gone remote.

The shift in the approach to ALS care is significant, according to Brous. I’m actually participating in one now through Synapticure, and it’s amazing to think that 10 years ago, when you were diagnosed, you were told to go home, get your affairs in order, and prepare to die. that’s still technically the timeline we discuss, but in reality, you see so many people living with this disease — even if it’s only for two to five years on average.

She highlighted the mobilization of various organizations and initiatives. The community has mobilized in incredible ways: the Veterans Affairs stepping in, organizations supporting families, genetic counseling efforts like those through I Am ALS, and so much more.

Brous is also part of Her ALS Story, a support group for women diagnosed before age 35. I’m part of Her ALS Story, a group for women diagnosed before age 35. We have over 100 members in 15 countries, and while a lot of what we share are hacks for daily life, we also provide emotional support. We didn’t go to school and launch careers or become moms and wives just to be sidelined. So even if it’s just venting into the void, it helps to have that space. And not every disease group has that.

Access to clinical trials remains a challenge due to strict eligibility criteria. You age out of clinical trials quickly. Most are based on time from diagnosis, not time from symptom onset — and it frequently enough takes a long time to even get diagnosed, which rules people out.

Programs like ACT for ALS and Right to Try have been crucial in expanding access to investigational treatments. Programs like ACT for ALS and Right to Try have been critical. They show that people are willing to try investigational treatments, and the system is starting to support that. Expanded access programs, off-label studies — they’re booming now, and it’s incredible to see. There are so many layers: the medications, the clinical trials, the emotional impact on the person and their family. It’s exhausting but hopeful. We’re making progress, and it’s thanks to advocacy and a community that refuses to give up.