(KWTX) A local third grader who’s serving as the national ambassador for the Muscular Dystrophy Association this year spent the past week in the nation’s capital lobbying on issues involving muscular dystrophy.
Faith Fortenberry, this year’s national ambassador for the Muscular Dystrophy Association, and her mother, Leeann, spent the past week in Washington, D.C., lobbying lawmakers. (Courtesy photo)
Faith Fortenberry, 8, was born with spinal muscular atrophy or SMA type 2, and while attending the MDA Advocacy Summit she met with U.S. Sens. Ted Cruz and John Cornyn, R-Texas as well as Central Texas U.S. Rep. Bill Flores, R-Bryan.
Faith was lobbying on a number of different issues including newborn screening, which would include screening for SMA so infants could be diagnosed at birth and start treatment immediately.
She also offered support for the Orphan Drug Act passed in 1983 to incentivize companies to develop drugs to tackle rare diseases when there would be no hope of turning a profit and therefore no financial reason to do so.
The final topic on Faith’s agenda was visiting with lawmakers about the Air Carrier Access Act which prohibits discrimination on the basis of disabilities in air travel.
Faith made the trip with the help of her mom, Leeann who is a school teacher.
“We took two cabs, one subway, and a shuttle to get around Capitol and buildings and a shuttle back to airport but we conquered DC like a boss and remember all this in a wheelchair which is quite challenging,” Leeann said.
Faith was also able to spend some time sightseeing, taking the Monuments by Moonlight Night Tour, which included a bus tour to see the Supreme Court, the Martin Luther King, Jr. Memorial and Arlington National Cemetery.
She returned home from meeting with lawmakers to her regular third grade duties, which including attending her school’s homecoming football game and painting a pumpkin for the school’s Monday morning pumpkin storybook character competition.