Planting a Seed of VCP Disease Awareness: VCP Disease Takes the Stage at Neuro 2026 in Brazil
Ana and Brenno recently traveled to Neuro 2026, the Brazilian Congress of Neurology, to help neurologists in Brazil recognize VCP disease. Many in our community knew Ana's father, Eduardo, who shared his family's story with us in Hello, my name is Eduardo. While Eduardo is no longer with us, Ana and Brenno continue to honor his memory and advocate for their family. VCP disease has touched several generations of their family, and it still affects loved ones today. In his post, Eduardo wrote, "I am still here! I am alive! I have a purpose!" That purpose lives on through Ana and Brenno's work. Twice, Ana and her family made the enormous effort to travel from Brazil to the United States to be with our community at our patient conferences. After raising awareness of VCP disease at Neuro 2026, Brenno shared his reflections with us.
Bringing VCP Research to Brazilian Neurologists
I've been working with Dr. Virginia Kimonis on a research paper describing the clinical spectrum of VCP disease in a group of affected families. Because I wanted to raise awareness of VCP disease in Brazil, I ran an additional analysis of the data and submitted an abstract to the Brazilian Congress of Neurology. My goal was simple: to help Brazilian neurologists better recognize and diagnose this rare disease.
The abstract was accepted for an oral presentation, so I put together a slide deck, which Dr. Kimonis reviewed, and presented our findings at the conference. The presentation went very well. Several physicians showed real interest in the topic and asked thoughtful questions.
We also prepared a case report abstract focusing on Ana's family, which we presented as a poster. We even noticed a few physicians stopping to read it outside the scheduled presentation time, which was very encouraging!
First Place Among All Oral Presentations
As a perfect ending to the experience, our abstract received first place among all oral presentations at the conference. It was an honor to see VCP disease recognized in front of so many Brazilian neurologists.
One Conversation That Made It All Worthwhile
Several physicians approached me with questions after the oral presentation, which was great. But my most memorable conversation happened after the poster presentation. A physician asked me a few questions and then said:
"Well, the next time I deal with a myopathy, I'll definitely remember VCP."
That comment meant a lot to me. VCP disease often starts with muscle weakness, and it can easily be mistaken for something more common. If a neurologist treating a patient with myopathy stops to think about VCP, a family might get answers much sooner. That one sentence told me I had reached my main goal: helping Brazilian neurologists become more aware of VCP disease and consider it in their clinical practice.
Looking Ahead
I truly believe we planted a seed of awareness among the physicians who attended. I hope this is an important step toward more recognition of VCP disease across Latin America, particularly in Brazil.
-- Brenno and Ana
You Can Do This Too
Ana and Brenno's work shows how much one family can change the way doctors think about VCP disease. While patients and families too often carry the burden of raising awareness, we’re grateful for the champions who step up to make a difference. You can help in the same way: present at a conference, share your family's story with a local neurologist, or bring information about VCP disease to your care team. Every conversation helps the next family get diagnosed sooner. If you're working on something similar, we'd love to hear about it and help share the news!
