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About East Oregonian : E.O. (Pendleton, OR) 1888-current | View Entire Issue (Aug. 26, 2017)
WEEKEND EDITION TRUMP PARDONS FORMER SHERIFF JOE ARPAIO 6A Adults look but never leap GRAND COLORS OF THE SOUTHWEST LIFESTYLES/1C OPINION/5A AUGUST 26-27, 2017 141st Year, No. 225 $1.50 WINNER OF THE 2017 ONPA GENERAL EXCELLENCE AWARD HERMISTON EOTEC looks ahead By JAYATI RAMAKRISHNAN East Oregonian Staff photo by E.J. Harris Susie Arroyo of Pendleton sits in a patient room in the day surgery unit of St. Anthony Hospital receiving her second dose of newly approved drug, Exondys 51, to help treat a rare muscle weakening disorder called Duchenne muscular dystrophy. Susie’s battle Woman with rare disease lobbies for drug approval, gets chance at life By KATHY ANEY East Oregonian Susie Arroyo savored the moment. The 27-year-old sat in her wheelchair with a rubber tourniquet around her forearm, looking calm as St. Anthony Hospital registered nurse Sally Bishop installed an IV port. Soon a drug called Exondys 51 sluiced into her veins. Arroyo’s green eyes conveyed a mixture of elation and victory. She had waited for years to try this drug, known generically as eteplirsen. The Pendleton woman has a rare, muscle weakening disorder called Duchenne muscular dystrophy. Children with Duchenne are usually in wheelchairs by the time they’re teenagers and often die in their 20s and 30s. The disorder strikes one out of every 3,500 boys. Arroyo estimates she is one of only 20-or-so females in the U.S. with Duchenne. Girls usually serve only as carriers, but Arroyo is what’s known as a manifesting carrier and she exhibits the same symptoms as her male counterparts. As a young girl, her muscles progres- sively weakened, then she seemed to rally in her teenage years, warding off stiff muscles with exercise. Then in 2009, things changed when Arroyo fell, broke her back and was encased in a full-torso cast for six months. Her heart deteriorated rapidly during her time of inactivity. Suddenly wheelchair-bound, the Blue Mountain Community College student was terrifi ed. In 2013, a surgeon implanted a device See ARROYO/12A “Susie is a fi ghter. She’s trailblazing for all of us.” —Pat Furlong, mother of two boys who died of Duchenne muscular dystrophy The fi rst fair and rodeo at the new Eastern Oregon Trade and Event Center grounds has come and gone, and board members are now turning their attention to operating and maintaining the facility. Board members of both the Umatilla County Fair and Farm-City Pro Rodeo spoke at Friday’s fi rst EOTEC board meeting since those events ended. Both said that overall, their events went well. “The board didn’t meet ... because they were worried about getting it completed, not having an event,” said Dennis Barnett of the rodeo board. “After months of working on the facility, the event went off without a hitch.” Dan Dorran, an outgoing fair board member and a member of the EOTEC board, said seeing the facility in operation was a dream come true. “I have thousands of new friends I never would have had before, and probably as many enemies,” he said. “Dreams don’t come this big very often.” Despite their overall satisfaction with the fi rst event at the new location, EOTEC board members quickly shifted focus. Their next major job will be to fi nd a permanent manager to run the facility. Nate Rivera, the superintendent of Hermiston Energy Services, agreed earlier this month to serve as interim manager of EOTEC for up to six months — but one of his main goals will be fi nding a candidate to replace him full-time. Rivera updated the board on some tasks he’s been working on since the fair and rodeo ended. See EOTEC/12A LA GRANDE PENDLETON Anti-Trump sign in business draws criticism, support By ANTONIO SIERRA East Oregonian La Grande Dry Clean- ing’s Facebook page is home to nearly 1,000 reviews, most of which deal less with the company’s ability to eliminate stains and more to do with President Donald Trump. The business became a hotbed of political attention when owner Heidi Van Schoonhoven posted a new sign in the downtown store- front’s window Aug. 16. “White supremacy is wrong,” the sign states. “Trump condones white supremacy. If you still support Trump, your busi- ness is NOT welcome here.” Van Schoonhoven decided to post the sign following Trump’s response See DRY CLEANER/12A Staff photo by E.J. Harris EO fi le photo Heidi Van Schoonhoven, owner of La Grande Dry Cleaning and a former Democratic candidate for state representative, has placed a sign in her shop window that reads, in part, “If you still support Trump, your business is not welcome here.” Tomatoes of a different color Yellow pineapple tomatoes sit in a bin in the Way of Life Farms booth on Friday at the Pendleton Farmers Market. Sat 90/58 Sun 97/64 Mon 98/66 Tues 99/65