I decided to build this website after my daughter was diagnosed with Pompe Disease at two years old.

As a medical physicist, I’m extremely research-focused, so after learning of my daughter’s diagnosis, I immediately began reading anything and everything that I could find related to Pompe Disease. After spending dozens of hours working through countless Pompe journal articles, I started a Trello Board in an attempt to begin to organize what I’d learned. I quickly realized Pompe is just too complex it wasn’t going to work.

I figured that if I was struggling like this, then others likely were too. So I thought it may be helpful to organize my collection of Pompe-related articles and provide a quick synopsis for myself and those that may have difficulty understanding the often “dense” language.

So before reading this, please realize that I’m not a trained physician, biologist or geneticist. I work in radiation oncology and have never even taken a high school or university level biology (besides Radiation Biology) or genetics course. That’s both a blessing and a curse, as my writing should be more accessible than an academics, however, it will also be more limited and, at times, probably wrong.

I do the best I can to present information in an accurate and clear way, but please don’t hesitate to contact me if my understanding or explanation is incorrect.