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Treatment must go on.

Skipping treatment is not an option for me, so here I am at the Cleveland Clinic for my treatment that last for about 6 hours. I was screened coming into the building and if you don’t have an appointment you aren’t allowed in the building. Thank you to all of the staff for taking care of us. #WeCanDoIt #WeCanGetThroughThisTogether #PompeWarrior #PompeDisease #PompeAlliance

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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

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International Pompe Awareness Day

Working on Pompe Awareness Day shirts! International Pompe Awareness Day is April 15th! ##PompeAlliance

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Pompe Alliance

I recently started a patient organization called Pompe Alliance. Our goal is to be a leader in patient services for the Pompe community. Please check us out on Facebook at Pompe Alliance and spread the word. It’s important to the rare disease community that knowledge of our diseases are shared far and wide. Thank you
#PompeDisease ##PompeAlliance

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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

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International Pompe Awareness Day

International Pompe Awareness Day is April 15th! Please show your support by wearing blue and sharing your pictures on Facebook with the ##MovingInWithPompe also help me get the word out about Pompe Alliance, the patient organization I have started. Please use the #PompeAlliance Thank you❤️