Reaching for a stronger tomorrow.
Our mission is to spread awareness and raise funding
for the research of Pompe disease and other rare diseases.
meet macie
Macie Anne Harris was born on August 21, 2019 to her parents Jeff and Caitlin Harris. Macie has an older brother Luke who is five years older than her. Macie loves Frozen, gymnastics, doing arts and crafts, and just being an active spunky little girl! After Macie’s newborn screening, she was diagnosed with Pompe disease.
what is pompe disease
Pompe is a rare, lysosomal storage disease causing muscular weakness that eventually leads to impaired mobility and breathing issues. This buildup of glycogen damages the body’s muscles, affecting mobility and organ function. Pompe disease is classified into two types: infantile-onset Pompe disease (IOPD) and late-onset Pompe disease (LOPD). In infantile-onset, symptoms typically appear during the first year of life and tend to progress very quickly. With late onset, symptoms may not be apparent immediately. Symptoms of LOPD can present at any time and most commonly consist of muscle weakness and breathing problems along with other ailments which can make LOPD very difficult to diagnose.
about macie's mission
Macie’s Mission proudly supports Dr. Priya Kishnani and her Pompe research at
Duke Children’s Hospital. As Macie’s Mission continues to grow, we hope to help organizations work towards finding a cure and assist individuals and
their families impacted by Pompe disease.
While Macie’s Mission is currently run by Macie’s parents and their friends, the goal is for one day Macie and Luke to take this on and continue the work that has been started.
