BY SHELBY NIEHAUS
A celebration of life meets and assurance of more to come when the Fiesta for CF comes to Altamont’s Carriage House Event Center on Saturday, Feb. 9 from 4 to 11 p.m. Beecher City resident Allyson Anderson, the Fiesta for CF’s organizer, spoke to the News and Banner on the afternoon of Jan. 23 about the event, the disease that spurred the fundraiser and many other like it, and her son Will, whom the Fiesta celebrates.
Cystic fibrosis, or CF, according to leading support organization Cystic Fibrosis Foundation (CFF), “is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time.” The disease is caused by dysfunctional CFTR protein, leaving much of the body’s mucus thick and sticky. Buildups of this disordered mucus in CF patients can also inhibit the release of digestive enzymes in the pancreas, block the liver’s bile duct, and affect some patients’ reproductive capabilities, particularly in men.
CFF reports that around 70,000 people worldwide live with CF, with 30,000 of them residing in the U.S.; over three quarters of that population are diagnosed before age two, much like Will Anderson was.
Will was born Jan. 28, 2018 to Allyson and Craig Anderson. Just two weeks later, he was diagnosed with CF through routine newborn screenings, and the Cystic Fibrosis Foundation stepped into the Andersons’ lives.
Founded by parents in 1955, the CFF bills itself as the “world’s leader in the search for a cure for cystic fibrosis.” The Foundation supports drug development programs, accredits care clinics around the world, operates a hotline for insurance and medication questions, and sets itself at the center of an advocacy and community system dedicated to supporting CF patients and their loved ones. Allyson speaks highly of CFF’s contributions; for instance, CFF funded $121 million in laboratory and clinical research in 2016 alone.
Thanks to dedicated research and specialized care, children with CF often live much fuller, more fulfilling lives than they did years ago. CFF claims that in the 1950’s, children diagnosed with CF “rarely lived long enough to attend elementary school,” and Allyson remarks that, if Will were born a generation previous, he would have had a 25-year life expectancy. As it stands now, Will could easily live to be in his 30s or 40s, and with advances like Symdeko, a recently FDA-approved therapy for patients with a number of CF-causing mutations, Will’s life could be even longer.
Will is too young for cutting-edge Symdeko right now, though he takes some 30 pills every day, has 30-minute chest physiotherapy sessions twice daily, and stays home from daycare as a precaution for his respiratory health. However, for the time being, Will has “basically no symptoms,” says Allyson.
Though the future looks bright for Will, every birthday is still a landmark, another instance when he’s beaten the odds. The Fiesta for CF was first conceived as a celebration of his continued health, and it turned into a hybrid birthday party-fundraiser over time. “It’s mostly for fun,” says Allyson. “We want people to look forward to it.”
On the slate for the Fiesta are chicken and steak tacos catered by Heron Cove of Effingham; a live auction (though “not a long one,” Allyson assures us); live music by Triple Ot Buck, back from extended hiatus for one night only; door prizes; a photo booth; and apparel for sale. (Oh, and cupcakes. It is Will’s birthday, after all.) The Fiesta promises to be memorable for all.
Already the Fiesta’s had great publicity, and attendance promises to be high as a result; sponsor tables at $500 for eight seats sold out over two weeks before the event date. “We appreciate the support of the community—we truly come from the best area,” Allyson comments.
Tickets are still on sale for the Fiesta at FiestaForCF.EventBrite.com, at MBS Communications in Altamont, and at First State Bank of Beecher City; the price rose to $50 per individual on Sunday, Jan. 27. The Andersons also report that they accept donations towards the Cystic Fibrosis Foundation for donors unable to attend the Fiesta. Donation checks should be made to the Cystic Fibrosis Foundation and mailed to Allyson and Craig Anderson, 17802 North First St., Beecher City, IL, 62414. The Foundation also accepts online donations at CFF.org, and is a 501(c)3 tax-exempt nonprofit organization.
After this year’s Fiesta is over, the Andersons will prepare for CFF’s Great Strides walk on May 11. Great Strides is the single largest national fundraiser for CF, with events in around 400 cities. Updates on Will, the Andersons, and the Great Strides preparations will be posted on Facebook at Fiesta for CF Fundraiser, @GodsWillCFFundraiser.
Finally, keep an eye out for Fiestas in many Februarys to come, and fundraisers of all sorts year-round; the Andersons are $37,000 into their $100,000 CF research goal, with a deadline set for Will’s fifth birthday.