adaptive living

Dwayne’s Story: Adapting My Life to Smash Pompe

In the beginning of October, I spent a week in Oahu, Hawaii — my bucket list trip. I’d never been on a flight longer than three hours, and hadn’t ever taken my electric wheelchair on a plane. I was full of fear. Once there,…

What’s an IEP, and How Can It Help Children with Pompe Disease?

Children with Pompe disease, like other children with special needs, may benefit from an individualized education plan (IEP; also called an individualized education program). What is an IEP? An IEP, authorized under the federal “Individuals with Disabilities Education Act,” is a plan or program intended to…