There are a lot of things Dr. Mindy Aisen wishes people understood about cerebral palsy, probably enough to make a top 10 list.

1) It’s not a disease. It’s a disorder or developmental disability. It is not progressive, degenerative or communicable.

2) It isn’t really one disorder but a category of similar neurological impairments noticed in infancy.

3) Most people with cerebral palsy have no mental impairment and many — perhaps an unusually high proportion — pursue careers in science, medicine, law and other high-skill professions. ….

Aisen, a Potomac resident who took over Nov. 1 as the director and CEO of the nonprofit United Cerebral Palsy Research and Educational Foundation, knows that demystifying cerebral palsy is an uphill battle.

The very name is arcane. What does “palsy” mean, anyway? People feel more comfortable donating to more familiar medical causes.
“It sounds sort of crass, doesn’t it, that ... we’re competing with cancer,” Aisen said in an interview at her home near Piney Meetinghouse Road. “Everything’s important. But that’s the reality. It’s hardly an idyllic world.”

AISEN IS FORTHRIGHT in talking about the cerebral palsy universe, an approach that seems aimed at unraveling the discomfort of those unfamiliar with the disorder. Some of the messages are standard fare for medical research nonprofits — that education is key, that researchers need more dollars, and that people with cerebral palsy have the same needs and desires as others.