About Us
Who We Are
In the summer of 2022 Remi Webb met Robert Marino, and learned of his little girl named Sofia Rose (photos below), and her story of being diagnosed with Late Onset Pompe Disease as an infant in late 2021.
While already searching for a worthy fundraising cause to start a campaign for, Remi decided that she would devote her time to helping Sofia however she could in finding a cure for Pompe disease.
Sofia's family, along with other local Pompe families, are in full in support of fundraising for Pompe research - specifically for Dr. Kishnani's Pompe Disease Research Fund at Duke Children's Hospital.
We look for this website to be a tool in the fight against Pompe Disease by making it simpler to spread awareness to potential donors, as well as a place for anyone affected by the disease to share their story.
All the Pompe Warriors out there need our support, and most importantly our donations to accelerate the progress towards a cure!
