by Kirby Lindsay, posted 4 April 2014
On Saturday, April 12th, from 1p – 5p, the Cystic Fibrosis Foundation (CFF) will host the 13th Annual Troll Stroll – a pub crawl for a cure, and a community. This event will bring to Fremont, “people who are directly impacted,” by this life-threatening disorder, according to CFF Development Manager Carmen Nelson-Moore. Of course, the Troll Stroll is also open, and welcoming, to all those who want to eat and drink at twelve (Nectar Lounge, Norm’s Eatery & Ale House, The Ballroom, The Dubliner, High Dive, Nickerson Street Saloon, Red Star Taco Bar, 9 Million In Unmarked Bills, Red Door, LTD Bar + Grill, Woodsky’s, and The George & Dragon Pub,) of Fremont’s favorite eating and drinking establishments, too.
Troll Stroll participant, and Cystic Fibrosis representative, Nate Schmidt admitted that twelve stops in four hours, “makes it kind of a marathon,” but it also makes for one heck of a fun afternoon. “This is something I look forward to all year,” he said, “everybody’s there. Everybody has a smile. Nobody is in a bad mood!”
Build Community
“All of the bar owners are amazing to work with,” acknowledged Nelson-Moore. The first year, the crawl took place in Pioneer Square, but the Troll Stroll has become a Fremont fixture over the last decade and Nelson-Moore insisted, “We would never consider moving!”
This year Nectar Lounge has stepped up their involvement, and organized a pre-party, for registrants (register before April 10th for only $40,) and VIPs (a limited number of VIP tickets are being sold for $75,) with live music starting at 12:30p. “It will be a fun, festive atmosphere,” in which to kick-off this afternoon of Troll Stroll-ing, Nelson-Moore observed.
Speaking with Schmidt, it becomes evident that gathering together to show support, by the CF community here, is an important part of this afternoon. As a consequence of their constant vigilance against any possible exposure to others who have Cystic Fibrosis, very few patients will be at Troll Stroll. “CF patients need to be kept separate,” Schmidt stated simply, “because we can spread lung infections,” from one patient to another. “We don’t mix,” he stated, and support groups are impossible.
Yet, “there is a very good Cystic Fibrosis community here in Seattle,” Schmidt praised. Troll Stroll, and a long list of other walks (next one on May 18th at Seattle Center,) runs, cycling rides, auctions, golf tourneys, stair climbs, and galas (November 8th,) allow for fundraising as well as building a supportive community among those affected and struggling along with loved ones who battle daily with this devastating disease.
Build Awareness
“We will be giving them a little information,” at the sign-up, Nelson-Moore admitted, for those attendees who want to learn more about CF, “but not so much they feel lectured.” Essentially, CF is an inherited, chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene, and its protein product, causes the body to produce thick, sticky mucus that can clog the lungs, and obstruct the natural enzymes from breaking down food, leading to malnutrition.
Thanks to donors, “really great things are happening,” Nelson-Moore said. CFF funds research, and while a cure remains elusive, Schmidt – who has Delta 508, the most common mutation of CF – is currently enrolled in one drug trial at the University of Washington. He’s on a combination of two drugs, one of which (Kalydeco) has been found to correct the gene in another mutation, and increase lung function.
“Seattle is a great hub for bio-medical research,” Nelson-Moore observed, and money raised by Troll Stroll, “goes directly to research.” With over 1000 different mutations of CF in existence, the search for a cure moves slowly, but gains have been seen in efforts to correct the genes, and even more in the anti-inflammatory and anti-infective drugs that have extended the life expectancy of CF patients. (Check out the CFF website for a pipeline chart on the progress of many medications in development.)
“I’m doing much better than typical,” Schmidt eagerly admitted about his CF. His daily treatment routine includes half-an-hour of physical therapy, eating healthy and taking a handful of drugs at each meal. “A lot of patients will describe it as being a job of its own,” Nelson-Moore reported. “If I take a day off,” from his treatments, Schmidt said, “it can hurt. I get horribly congested. I have digestive problems.” Even with the life-long regime, as a CF patient, Schmidt currently has a life expectancy of about age 38 – although, at his birth, the life expectancy was in the teens.
Build Research Funds
Fundraisers like Troll Stroll have a direct impact on the future for those with CF, plus it is a fun event, and a popular annual Fremont pub crawl – that has sold out. Register now, and give $40 for Cystic Fibrois research – and receive 12 drink tickets, and a t-shirt. Registration closes April 10th.
For those uninterested in Stroll-ing, CFF will take donations on-line or walk-ins to Nectar on April 12th. If you want to participate, and don’t want to drink, volunteers are also needed.
“I feel the attitude is really great,” Schmidt observed about Troll Stroll. Build, and support the CF community – or join the crowds who don’t care about the cause, and just want to have fun with their friends!
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