about us

In October of 2021, Aubrey, then 3, was diagnosed with Reducing Body Myopathy. We knew something was wrong but this disease was nowhere on our radar, in fact, we had never heard of it.

When we were brought back to speak with a team of doctors, we learned this disease is incredibly rare - there are only about 30 cases in all of medical literature. Her doctors explained that this genetic neuromuscular disease was caused by a single mutation in a gene called FHL1. It is rapidly progressive in children, and there is no treatment option.

We were told to “Take her home and enjoy her,” as this disease causes our daughter to rapidly deteriorate, losing all abilities and leaving her immobile while also causing severe and painful joint contractures…and a host of other medical possibilities. Respiratory failure is a major contributor to the poor prognosis.

We are unwilling to accept that prognosis and are dedicated to raising awareness and providing funding for research so Aubrey, and children afflicted by Reducing Body Myopathy have a chance at a future beyond this diagnosis.

We need your help to make this a reality.