Rare Disease Day

Imagine that all of a sudden, your world stops.

Your family’s focus becomes a single, life-threatening topic. Home becomes the only place that is safe or manageable. Your physician is on speed dial. Doctors’ offices are the only place you have been in a while. You monitor symptoms, wondering if one will lead to more. You think, “This will pass soon,” but weeks, months, even years drag on. Your only hope for change is out of your control, resting with specialists. Questions linger.

This isn’t COVID-19. This is everyday life living with a rare disease. But having lived in a pandemic, we can all now empathize…

Collaborative approach used for rare diseases can help us defeat COVID-19

The DADA2 Community: Working Together

Families, like ours, working together for a better tomorrow.

dada2 History

Honoring Dr. Kastner

When Kelsey was an infant, we were wrought with worry, concern, and fear. A few years into our journey, we were fortunate enough to meet Dr. Dan Kastner at the National Institute of Health.

Hope followed and years later, a diagnosis. Dr. Kastner was thoughtful, eloquent, and provided us with much-needed answers. We learned this week that Dr. Kastner was awarded the Crafoord Prize, in recognition of his work that led him to dada2.

We thank you for your work and cannot truly express the gratitude that must be felt by all of the families and patients you have helped throughout the years.