Thank you for our book and sloth cuddlies as they call them ☺️🤍 Love Easton and Callan in Arkansas USA 🇺🇸 🦥 #PompeAndMe #InvisibleDisability #RareDisease #NewbornScreening

Chase's sloth buddy and book arrived safely in Minnesota USA 🇺🇸 🦥 Happy you like them 😊 I love the pictures 💙💚 #PompeAndMe #RareDisease #NewbornScreening #InvisibleDisability

#PompeDisease I fully agree with this ❤️

For my Pompe friends, if you use this machine.

Please can you sign this petition for our fellow patients in Colombia? Can you help Fernando Rodriguez out by signing this petition? He and other patients in Colombia don't receive their treatment anymore. Please sign to help Fernando to be more powerfull! chng.it/9FcmnmLQ6V

Pompe Disease is an invisible disability in the beginning. You may be in pain or discomfort & not show it & some conditions are invisible to the uneducated eye. Not all disabled person use a wheelchair. Because you can't see it, it doesn't mean it doesn't exist #PompeDisease

Today's travelling sloth is a little Ty Beanie cutie called Slowpoke and he is now flying to Geneseo in Illinois 🇺🇸 He has a Pompe and Me children's book and is off to live with a young man called Brooks. See you soon! 🛬 🦥 #PompeAndMe #FindYourTribe #InvisibleDisability

#PompeDisease

The AMDA/IPA presentation on exercise from the recent conference. #PompeDisease m.youtube.com/playlist?list=…

Current understanding of speech impairment in Pompe disease, a presentation from the recent AMDA conference. #PompeDisease m.youtube.com/watch?v=cbJ6hD…

School orientation for my son was everything I hoped it’d be. Changing schools is extra complicated for children with Pompe disease, by Keara Engle #PompeDisease pompediseasenews.com/columns/school…

Metabolic processes altered in Pompe disease muscles: Study Changes seen in cells of adults with late-onset disease, a small study shows, involving the UK, USA and Europe #PompeDisease pompediseasenews.com/news/metabolic…

Little Meritt is a happy boy. His sloth and book arrived safely in Suffolk Virginia 🇺🇸 🦥 📖 Enjoy little man 💙💙 #PompeAndMe #FindYourTribe #RareDisease #InvisibleDisability

#PompeDisease - for any friends with Pompe in USA and Canada, this is a fantastic resource for information and even equipment

#PompeDisease

#PompeDisease #NewbornScreening #RareDisease #Disability #InvisibleDisability