Patients, families at the core of achalasia awareness and care - Children's National

More than 30 patients and their families recently attended Achalasia Awareness Night at Children's National Hospital, a moving and empowering event led by Mikael Petrosyan, MD, MBA, and Timothy Kane, MD, with the dedicated support of the entire surgical team - including Jill Rafie, Segale Cephas and Rebecca Chavez.

"We are steadfast in our mission to provide not only world-class surgical care but also a strong network of support for families navigating achalasia," Dr. Petrosyan said. "This event continues to set new standards for what is possible when patients, families and providers come together - united by compassion, collaboration and the shared goal of improving lives."

What it means

The overwhelming turnout highlighted the importance of creating spaces where families can connect, learn and inspire one another. Smiles, tears and words of gratitude filled the evening, underscoring just how meaningful the gathering was for patients, families and providers alike.

The program featured insights from the expert surgical team at Children's National, who discussed the latest treatment options, innovative techniques and supportive resources available. The care team's message was clear: no family walks this path alone, and cutting-edge solutions are being developed and delivered every day at the hospital.

More than education

This is the second year for this event that began as an annual educational program but has quickly blossomed into something much greater - a celebration of resilience and the power of community. Families gather in an atmosphere of warmth and understanding, sharing stories, struggles and victories. For many, this event is the first opportunity for them to meet others who truly understand their journey with pediatric achalasia. The connections create an invaluable sense of unity and belonging.

The parent and patient panel, where families courageously share their experiences - the uncertainty of diagnosis, the daily challenges of living with achalasia and the transformative impact of surgical care, was especially impactful according to attendees.

The enthusiasm of the attendees highlights the importance of creating spaces where families can connect, learn and inspire one another.

Why it matters

Achalasia is a rare condition in adults (1/100,000) and even less common in children, occurring in only 0.1 per 100,000 patients with an estimated prevalence of 10 per 100,000. The rarity of achalasia in children compared with adults makes collecting enough statistically significant evidence about how best to treat them difficult, more so than for other more common pediatric surgical conditions.