Floored: Advocate group visits House

By Kris Kitto

Their day starts before 8 a.m., when they meet Rep. Gregg Harper (R-Miss.) on the Capitol’s east steps for the standard group photo. The roughly 150 advocates for Fragile X syndrome huddle together with Harper for a few quick shots before they fan out across Capitol Hill to educate members of Congress on the genetic disorder and ask that federal money be directed to research and public health efforts for the condition.

But on this March day, before they knock on lawmakers’ office doors, these grassroots representatives — Matt from Alabama, Paula from New Jersey, Dylan from Maryland, Ruth and Irwin from Illinois and their colleagues from 30 other states — will sit in the seats of the elected few while Harper treats them to a special briefing from the House floor.

The freshman lawmaker’s 20-year-old son, Livingston, was born with Fragile X syndrome, a genetic disorder that causes behavioral, developmental and language disabilities across the affected person’s lifespan. Harper, who, with Reps. Bill Delahunt (D-Mass.) and Phil Hare (D-Ill.), is a co-chairman of the Fragile X Caucus, has become one of the legislative body’s biggest champions for research of and a cure for the disorder. Of the few times he has been able to lead groups onto the House floor — an infrequent occurrence for members — Harper has asked Fragile X advocates onto the otherwise members-only space twice.

“It’s a wonderful day because I get to see a lot of friends — like these two,” Harper says in a first-floor hallway of the Capitol, greeting the advocates as they make their way through security. He points to Tracy Stackhouse and Mouse Scharfenaker, the co-founders of the Developmental and Fragile X Resource Center in Denver, and explains that they are two of the first Fragile X professionals he and his family met when his son was diagnosed with the condition.

“Oftentimes the fathers take on the role of becoming really strong advocates — but nobody’s done it like this guy,” Stackhouse says, pointing back to Harper. For as long as they’ve been working on Fragile X, Stackhouse and Scharfenaker say the Washington advocacy day is a highlight and admit they’re “very excited” to go on the House floor.

The Hill