Rare Disease Turns Massachusetts Family Into Part-Time Lobbyists

Maggie Dion, a 9-year-old from Massachusetts, dressed up as President Donald Trump for Halloween to send a lobbying message to Washington.

She and her brother Peter Dion, 13, have a type of limb-girdle muscular dystrophy, a rare genetic disorder with no known cure. The situation turned her into a junior online policy influencer and her parents, Joe and Courtney Dion, into part-time lobbyists. Their goal is to push to renew a lapsed law that offers financial incentives to bio-pharmaceutical companies to develop treatments for the rarest children’s conditions.

With the government shutdown and end-of-year dealmaking uncertain, the Dions have stepped ...