HopeTravels

Hope the Pompe Sloth and I recorded a video about Pompe Disease and Rare Disease issues. There were over 800 advocates in Washington, DC this week meeting with their representatives to advocate for issues that affect rare disease patients and their families. #rdla #PompeAlliance #everylifefoundation #HopeTravels RareDC2020

This is the face of Pompe in the morning. I had to pull out the headband because I am too tired to comb my hair. I did try to put on a little makeup though. ##PompeAlliance ##MovingOnWithPompe ##HopeTravels ##UpYoursPompe #PompeDisease