Amy Spranger

FIGHTING CYSTIC FIBROSIS...

AMY SPRANGER

Jason Klaiber

Though 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.

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.”

She also said that a spike in pregnancies carried to term by women with cystic fibrosis is a trend attributed largely to the drug, while some individuals have reported a decrease in the time and difficulty of their daily treatment regimens. Such routines normally involve taking enzyme pills, doing monitored exercise and airway-clearing chest compressions, the latter an in-vest therapy achieved with a generator that tends to append aerosol delivery.

As a result of modern treatments, some on lung transplant waiting lists have regained their health enough to no longer require the procedure according to Spranger, who said her mother-in-law’s cousin who had cystic fibrosis underwent a double lung transplant soon after she started as executive director.

“Within a short amount of time, we’ve made tremendous progress, but the one caveat is that this is a treatment, not a cure, and it also doesn’t help everyone,” Spranger said. “There’s still about 10% that don’t have anything like this, so we want to get a treatment that keeps everyone kind of baseline healthy.”

With the passage of the decades, more and more people with cystic fibrosis are living into their 50s, 60s and beyond, but the pursuit of that lasting cure for all has become a personal objective for Spranger.

As area director, her involvement has sprouted friendships with family members and caretakers of people battling the sickness as well as the organization’s many volunteers and patients themselves. The community comes together as often as possible for various fundraisers, often picking up steam for the May awareness month and its coinciding Great Strides walks.

Supporting the cause step by step, those celebratory strolls act as the top-earning endeavors for the organization along with the direct, year-round campaigns for funds.

In the months leading up to events like golf outings, cycling rides and the walks, Spranger has worked with her colleagues to make sure that budgets are met and that the logistics on the planning side are sorted out. She also coaches registrants on how to secure the maximal amount of donations for their team, and she works with corporations to come up with ways they can lend support.

Through COVID, the foundation has hosted an order-out, tapasoriented spin on its Southern Tier food-sampling event, a virtual version of its honorary gala and in place of its walks, a car parade. “The one silver lining in COVID is that it really taught us to be kind of creative and think outside of the box,” Spranger said.

Though infection prevention and six-feet recommendations around patients were already commonplace at the CFF’s organized indoor events, she said she looks forward to the in-person return of Great Strides and the October gala at the Marriott Syracuse Downtown that will be recognizing Upstate Hospital’s cystic fibrosis care center.

Amy Spranger previously worked as the associate director of corporate development for the American Diabetes Association and as a manager of member development and retention for the MedTech Association. SWM

In her free time, Amy Spranger likes to camp, kayak and ride bikes in the summertime with her daughter and her husband. In the winter, she enjoys ice skating or snowshoeing if the chance arises.