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20 BCBusiness aPrIl 2016 Adams-Oliver syndrome is one of the world's more than 7,000 rare diseases, which are usually inherited or caused by a genetic mutation and a•ect fewer than one in 2,000 people. These diseases sit on the sidelines of Canada's multibillion-dollar health research sector—which pours money into the nation's 50 dominant diseases, including heart disease, cancer, arthritis and diabetes—making it dicult to determine treatments let alone nd a cure. Yet rare diseases have a signicant impact on the health care system: while a specic dis- ease may a•ect a mere handful of Canadians, Patel says the total number translates into one in 12 Canadians a•ected, or about three million people. Patel—who cared for two patients with the syndrome early in his career, only to see them die—resolved to nd new, e•ective therapies. To raise money to fund clinical treat- ments, Patel helps organize an annual fundraiser called Rare Finds, held this year at the Sheraton Vancouver Wall Centre on April 23. About $250,000 a year is elicited by the Vancouver event, its sister fundraiser Rare Finds Toronto, the local Lace-Up for Kids annual skate-a-thon, private donations and bake sales. The money raised is then distributed via a microgrant model—based on the work of 2006 Nobel Peace Prize winner Muhammad Yunus, whose microcredit lending program helped poor people with no collateral start and run their own businesses. If a physician encounters a rare disease that doesn't respond to treatment, he or she can apply for a micro- grant from the Rare Disease Foundation. The maximum amount is small—only $3,500— but it comes quickly: an applica- tion will receive a yea or nay within a matter of weeks, versus the many months waiting for approval from major granting E very winter growing up in Williams Lake, Bryan Reid—star of HGTV's Timber Kings— would trudge after his father on a 50-kilometre trapline, collect- ing animals and resetting traps. Especially when the temperature plunged to minus 50 Celsius, he looked forward to their stop at a little log cabin on the trail with a wood stove and a bunk bed. "You'd light a re, and you're almost dead exhausted," the 67-year-old homebuilder recalls. "Then half an hour later you'd be sitting there in a T-shirt, laughing about what happened during the day, and I thought, 'This is living. This log cabin is living.'" That hut epitomizes the rus- tic nostalgia that most people associate with a log cabin, but the homes in construction on Timber Kings are on a much di•erent scale. Now in its third season, the popular show fol- lows Reid's Pioneer Log Homes crew around the world as they carry out astonishing feats of engineering and artistry. The rst episode features an 82,000-square-foot summer home near Moscow, with a total budget that Reid estimates at close to $100 million. On the same episode, a 4,500-square- foot home is built on a steep bank overlooking Lake of the Woods in northwestern Ontario; one of his crew, Beat Schwaller, deftly chainsaws an extra notch in a log while balancing high above the rocky shore. All of Pioneer's homes are rst built in Williams Lake— with western red cedar logs bodies such as the Canadian Institutes of Health Research (CIHR), the Natural Sciences and Engineering Research Coun- cil of Canada (NSERC) and the Social Sciences and Humanities Research Council (SSHRC). Dr. Diane Finegood, president and CEO of the Michael Smith Foundation for Health Research (MSFHR), oversees the distribu- tion of millions of research dollars—about $450 million since 2001—with 90 per cent of it com- ing from the B.C. government. While she says that Patel's micro- grant model o•ers a "very inno- vative and interesting approach" to health-care funding, Finegood argues that it's not applicable to conditions like heart disease and cancer, which cost billions of dollars every year in health-care costs and require commensurate research dollars, she says. But as far as Patel is concerned, the $3,500 microgrants are showing signicant returns on investment. "The people we see in our clinic—they capture our hearts, because they are hopeless and have no options and we just manage their symptoms," Patel says. Microgrants allow "busy clinicians who normally don't do research" to explore a novel idea to improve care, he says. A microgrant can provide suf- cient money for special tests like whole-exome sequencing, which detects mutations that might identify it as a known rare disease. Or it can act as a pilot project, providing the evidence needed to secure a multimillion- dollar grant for a large, long-term project. And Patel's model is inspiring others. The patholo«y depart- ment at BC Children's has also set up a microgrant initiative, while researchers from the U.S. and Europe have submit- ted applications. "My goal has always been to put ourselves out of business in 25 years. It's enough time to change the system." Where the Dollars Go Timber Ahoy! How one of the stars of Hgtv put williams lake–and his booming log-home business– on the map by Marcie Good M a n u f a c t u r i n g In 2015, total health expenditures, both public and private, in Canada were an estimated or according to the Canadian Insti- tute for Health Information of every public and private dollar spent on health care in Canada funds health and medi- cal research, according to Research Canada, a health research advocacy group of public dollar funds is funnelled into research, says Research Canada $219.1 billion < 1% 1.5% $6,105 per person,

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