Speak Now for Kids’ Family Advocacy Day Hero to Participate in Congressional Briefing

R_ehZg7NJcorxiJ25_Haupt.Grace_Photo_3.jpgFourteen-year-old Grace Haupt will be in Washington tomorrow to speak at a briefing on the Children's Hospitals Graduate Medical Education (CHGME) program. CHGME helps train the next generation of general pediatricians and pediatric specialists by providing federal funds to independent children’s hospitals with residency programs. Make sure to follow @speaknowforkids; we’ll share live updates from the briefing beginning at 3 p.m. EST on Thursday, Feb. 25, and you can learn more about Grace and about CHGME.

Grace’s bio, below, was originally published ahead of her attendance at 2015 Speak Now for Kids’ Family Advocacy Day last June.


Grace is smart, fun-loving, teen who loves learning, reading and spending time with family and friends. But Grace’s world—filled with friends and homework, field trips and family fun—differs from that of her peers in one important way: Grace has Friedreich’s ataxia (FA), a progressive neuromuscular disease that causes loss of coordination in the arms and legs as well as muscle weakness and fatigue. FA is relatively rare, with only 5,000 cases diagnosed in the U.S., and there is, as yet, no cure. Children with FA frequently develop curvature of the spine and an enlarged heart.

Though she is often tired by the end of her school day, Grace doesn’t dwell on her disease. She loves learning and is a voracious reader with a keen scientific mind. Tinkering with electronics is her passion, and she has been known to ask for alligator clips and cables for Christmas. “I love playing around with circuit boards,” she says, “and I want to make my own inventions.” The family’s “great provider of facts,” Grace is often called on to help her siblings with their schoolwork. An early riser, Grace likes to catch up on fiction before the beginning of the school day.

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