Syracuse Woman Magazine - May 2022

Page 32

32

INSPIRE

FIGHTING CYSTIC FIBROSIS...

AMY SPRANGER

Jason Klaiber

T

hough she had yet to be informed about the sufferer of the genetic disorder in her own family tree, Amy Spranger’s inner voice told her seven years ago to take a leap at the leading role for the Cystic Fibrosis Foundation’s local chapter. Becoming increasingly interested in the organization’s mission as she made her way through the interview process, the Liverpool resident would proceed to rely on her background in medical supply sales and non-profit work for the relationship-building position of Syracuse executive director. Now, with plenty of advancement made by the national foundation since then, Spranger has found herself settling into an even greater amount of oversight as its new area director for the cooperating regions of Western, Central and Northeastern New York. Together with close to 70 others across the country, those chapters have worked alongside researchers and pharmaceutical companies the world over to discover and roll out different treatments for cystic fibrosis, all in the hopes of one day zeroing in on a permanent cure. Cystic fibrosis is considered rare overall, but out of 75,000 cases worldwide, the United States accounts for about half, according to the Cystic Fibrosis Foundation (CFF) website.

MAY 2022

The disorder is characterized in most instances by the buildup of a thick mucus that traps digestive enzymes, thus causing breathing difficulties while preventing the secretion of these proteins from the pancreas. Damage to the lungs results, whether by inflammation, scarring, the appearance of infections or lowered function to another extent. Some patients also develop diabetes and sinus issues. Back when the CFF was founded in 1955, it was uncommon for anybody born with the inheritable condition to live long enough to attend elementary school, but over the years the organization has made good on its slogan’s promise to “add tomorrows.” Treatments funded by the organization just during Spranger’s tenure have included genotype-based modulators for the roughly 1,700 different mutations of cystic fibrosis. One of those products, called Trikafta, is said to reduce day-to-day debilitation for 90 percent of people dealing with the disorder. “That’s been an incredibly effective game-changer,” Spranger said of the medication. “From what we’ve seen, people on Trikafta who couldn’t walk up the stairs or even change the sheets on their bed without being out of breath for 20 minutes can now run up a flight of stairs without even thinking about it.”

M I N D & BODY H E ALTH EDITION


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