Sandra D. Young, of New Jersey, was diagnosed with late-onset Pompe disease in 2016. She received her doctorate in nonprofit management and leadership and serves on the board of the Pompe Alliance. She shares the types of tech that help her in everyday life accessibility and ease with Pompe disease.

One of my Pompe life hacks is this little grabby thing. I can’t bend over and stand up easily, so I keep these in my walker and these are like — I call them the Long Arm of the Law. They grab everything off the floor, off the top of a cabinet, anything that I can’t reach. These are my long arms.

My house is automated. And when I say that — the lights, the alarm system, when FedEx comes, any deliveries, Amazon — if I’m at my desk, I don’t even have to get up and go to the door. I go on my phone.

And it’s, it’s to the point where I have regular, my regular UPS guy, my regular FedEx guy, they know, they’ll even bring it inside. And I have a place where they sit it and I can see them. So, you know, it’s not like I’m letting a stranger in my house. I can see them. They’ll come in.

I’ll say, you know, please put it inside. They’ll place it inside. They leave. I go on my phone and lock my front door. So I think technology is wonderful for someone with Pompe or any disease that’s similar, that keeps you from having to do things physically.