Leawood residents Shawn and Amy Perkins had barely heard of cystic fibrosis (CF) when their youngest son, Johnny, was born with it four years ago. What they had heard about it was that kids with CF typically didn’t live beyond their teen years.
After the initial devastation, Shawn and Amy learned more about this genetic disease and focused on the bright spots. They found that medical advancements have made it possible for Johnny to live into his 30s, 40s and beyond.
Desperate to raise research money by way of a novel fundraiser, the couple recalled another city’s annual Spring Spruce Up event put on by the American Society of Interior Designers (ASID).
Designed to raise money for ASID programs, the event gave consumers the opportunity to receive a one- or two-hour in-home or office consultation with a professional designer for a $100 or $200 fee.
The inventive couple envisioned connecting Spring Spruce Up with the Cystic Fibrosis Foundation.
Amy called the Missouri West/Kansas ASID chapter to pitch the proposal: Would local ASID members be willing to donate a one- or two-hour consultation to people who donated $100 or $200 to the CF Foundation?
Fast-forward to 2010 when the third annual Spring Spruce Up event to benefit the CF Foundation has commenced in the Kansas City metro.
Amy hopes that the ASID Spring Spruce Up event will raise awareness about cystic fibrosis, a little-known disease.
She herself knew little of CF until a prenatal screening during her second pregnancy revealed that she was a CF carrier. Shawn then discovered he was a CF carrier too. Neither parent ever had any reason to suspect they might be a carrier.
While the couple’s first son, George, showed no signs of CF at birth, Johnny did. Amy and Shawn have been championing the CF cause ever since.
Intent on raising private funds, they are spreading the word about ASID’s Spring Spruce Up.
“It’s really a win-win for everyone involved,” says Amy.
Whether a tired interior space needs fresh inspiration or a home on the market needs staging, a Spring Spruce Up consultation is sure to ignite ideas thanks to the design savvy of the 20-plus local ASID designers who give time during this one-of-a-kind event.
Personal indulgence aside, event organizers say the consultation also makes a unique gift for an expectant friend, a cluttered colleague or for Mother’s Day.
Cedar Creek homeowner Amy Ellzey fondly recalls her experience with the event last year.
After eight years in their home, Ellzey and her husband were ready to make some design changes reflective of their style, but getting started felt overwhelming.
But once Ellzey connected with ASID Designer Arlene Ladegaard of Overland Park-based Design Connection, her design vision held clarity.
“In our short visit, Arlene provided some easy-to-do suggestions which involved adding ceiling fans, area rugs and moving furniture around which made a huge difference,” says Ellzey. “In addition, Arlene gave advice on how to prioritize our future kitchen and master bath projects.”
While Ellzey says the Spring Spruce Up event motivated her to update her home’s interior design, she was especially pleased to support Johnny and others facing CF.
Like Ellzey, designer Ladegaard had nothing but positive impressions about the experience.
“I absolutely loved working with this project and would definitely do it again,” she says. “It was so much fun and it was for a great cause.”
Amy notes that donations to the CF Foundation make a measurable impact, as 90 cents of every dollar donated is spent on research.
“The Foundation has been a real leader among charities, setting a precedent for funding research on ‘orphan’ diseases,” says Amy. “Since only 30,000 people in the U.S. have cystic fibrosis, compared to the hundreds of thousands that have diabetes or heart disease, pharmaceutical companies haven’t focused on developing drugs for it. But the CF Foundation has developed programs to get CF-fighting drugs and life-saving technologies through the pipeline.”
Looking into Johnny’s and Amy’s eyes, one can’t help but have faith that a CF-related medical breakthrough lies just beyond the horizon.
“Having CF is really a race against time,” says Amy. “People with cystic fibrosis do so many things every day — airway clearance, inhaling antibiotics, taking numerous pills — to add one more day to their lives, hoping to make it to the day when there’s a cure. And we are so close to that day.”
With ASID Spring Spruce Up participants helping to ensure that cutting edge research is ongoing, good news surely has a greater chance of arriving much sooner than later.
And that is a truly beautiful thing.
words: Rachael Hedgcoth
photos: Abbe Findley