HopeTravels

Join the Conversation on
7 people
0 stories
2 posts
  • Explore Our Newsletters
  • What's New in
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Post
    See full photo

    Rare Disease Week On Capitol Hill

    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

    2 comments
    Post
    See full photo

    Pompe in the morning

    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