MDA Ambassador Sunny Brous: Progress, Advocacy, and Connection in ALS

Sunny Brous

Amyotrophic lateral sclerosis (ALS) is a rare but devastating neurodegenerative disease that affects approximately 1-2 per 100,000 people globally. Despite its relatively low prevalence, ALS has garnered significant attention in recent years due to advances in research and therapeutics. Notable breakthroughs include FDA approval of drugs like edaravone (Radicava; MT Pharma) and tofersen (Qalsody; Biogen), the first marketed treatment specific for those with SOD1 mutations.

Over the years, the ALS community has become even closer with several of the other neuromuscular communities, as many of these disorders share related symptoms and biology. This was even more evident at the 2025 Muscular Dystrophy Association (MDA) Clinical & Scientific conference, held March 16-19, in Dallas, Texas, where groups of patient advocates, clinician experts, and leading researchers all culminated to highlight the latest advances in drug development and clinical care.

Among them included Sunny Brous, an MDA Ambassador and patient living with ALS. Brous, who has been a beacon of light for the community, sat down with NeurologyLive^® during the meeting to shed perspective on her 10-year journey with ALS and her transition from patient to advocate. In the interview, she talked about the importance of vulnerability, resource sharing, and connection within the ALS community, and the powerful intersection of advocacy and science at conferences. Above all, Brous highlighted ongoing challenges in clinical trial access and celebrated the progress advocacy efforts have brought to the ALS landscape.

NeurologyLive: Discuss what it means to be an MDA partner and to connect with so many people about your disease.

Sunny Brous: In January, I celebrated 10 years since my ALS diagnosis. 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?

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. 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.

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.

What are your thoughts on the keynote speech, the ALS track, and the broader mix of patient advocacy alongside scientific and clinical professionals?

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.

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?

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 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.

Only about 10% of ALS cases are genetic, which means most of us are out here in left field just hoping for the best. While ALS might not run in my family, other neuromuscular diseases or neurodegenerative diseases like Parkinson disease, Alzheimer disease, or Huntington disease potentially could.

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!

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 incredible to imagine what progress we’ll see in the next 75 years.

How has the ALS community become even stronger in recent years?

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.

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.

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.

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.

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.

You age out of clinical trials quickly. Most are based on time from diagnosis, not time from symptom onset — and it often takes a long time to even get diagnosed, which rules people out.

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.

Transcript edited for clarity.