Fall 2014 THETHE CANADIANCANADIAN FORCESFORCES SNOWBIRDSSNOWBIRDS AMBASSADORS FOR THE CH.I.L.D. FOUNDATION The Canadian Forces Snowbirds are Ambassadors for the CH.I.L.D. Foundation, the only charity in Canada so designated. On August 5, 2014 the Snowbirds 431 Air Demonstration Squadron met children with Crohn’s Disease, Ulcerative Colitis and liver disorders at Landmark Aviation at Vancouver International Airport. The pilots answered a myriad of questions from the children…“do your wings ever touch?” (No!)…“are there any girl pilots?” (Yes!)…“do rockets make the smoke from the jets and where are the rockets?” (No, no rockets! Paint is put in the exhaust to make the smoke!) Each year in a different city of British Columbia, “Snowbirds Fly for CH.I.L.D.” takes place, thrilling thousands with a spectacular aerial demonstration, which took place in White Rock this year on the evening of August 6th. For the past 11 years, the CH.I.L.D. Foundation invites children and their families from the hosting community for a luncheon and to meet with the Snowbirds Pilots. It is the absolute highlight of the summer! The children are able to scramble among the jets, take photos with the pilots, and bring home autographed t-shirts and memorabilia from their experience. The CH.I.L.D. Foundation is very grateful for the support of the Canadian Forces Snowbirds, Bombardier Inc., the Province of British Columbia, Ministry of Community, Sport and Cultural Development, Coralee Oakes, Minister and CH.I.L.D. Foundation Director Scott Harrold, Civil Snowbird Coordinator, Director of Operations for CH.I.L.D. Foundation. Photo Credit: Linda C. Photography CH.I.L.D. Foundation Funds Crucial Equipment for Ground-Breaking Research. See Page 4. CANADIAN CHILDREN INFLAMMATORY BOWEL DISEASE NETWORK: A JOINT PARTNERSHIPPARTNERSHIP OFOF CIHRCIHR ANDAND CCH.I.L.D. FOUNDATION In collaboration with the Canadian Institutes of Health Research (CIHR) and the Network Advisory Committee (NAC), the CH.I.L.D. Foundation has established a Task Force with a goal of establishing a comprehensive performance assessment framework to track the Canadian Children’s IBD Network’s Tim Murphy, , MHSc, impact. The goal of the task force is to define a balanced set of key indicators of network success, which MBA, CPA, CMA, will be used to inform the Network Advisory Committee and the Funders. A collaborative effort is Executive Director, envisioned for this important work. The Task Force will feature key representatives from the Network CH.I.L.D. Foundation Advisory Committee – Dr. Claudio Fiocchi – International representative on the NAC from the Cleveland Pediatric IBD Network. Clinic; the Canadian Institutes of Health Research – Mr. Paul Belanger; the Network’s Leadership Team – Dr. David Mack – Children’s Hospital of Eastern Ontario; and, the CH.I.L.D. Foundation’s Scientific Research Advisory Council – Dr. Aubrey Tingle and Tim Murphy. The Task Force will complete its work and report to the Network Advisory Committee in the fall of 2014. The Network Advisory Committee to the Canadian Children Inflammatory Bowel Disease Network: A Joint Partnership of CIHR and CH.I.L.D. Foundation, met at SickKids Hospital in Toronto with representative research scientists in April, 2014. The next meeting will be held in November in Vancouver. FIRST TIME DONOR’S SUPER TAX CREDIT Great news for potential first time CH.I.L.D. Foundation donors! If you or your significant other have not made a charitable cash donation since 2007, you now qualify for a First Time Donor’s Super Credit! That means you can donate up to $1000 to the CH.I.L.D. Foundation and receive an additional 25% charitable tax credit from the Government of Canada. This combined with the standard charity credit of 15% for up to $200 and 29% for up to $1000 means you will be eligible for a one time combined tax credit of up to 54% from your donation! Learn more at: www.cra-arc.gc.ca/fdsc There’s never been a better time to become a CH.I.L.D. Foundation supporter! HoHHonononnooouuurrriiinnngg PAT QUINN, O.C.,O.B.C. Recognized and respected in Canada and world-wide ffoor his accomplishments in amateur and professional hockey. CH.I.L.D. Foundation Honourary Doorman of the Year 2 A MESSAGE FROM THE CH.I.L.D. FOUNDATION PRESIDENT & CHIEF EXECUTIVE OFFICER The Foundation for Children with Intestinal & Liver Disorders The CH.I.L.D. Foundation has enjoyed a busy Summer with Suite 201, 2150 Western Parkway our amazing Ambassadors, the Canadian Forces UBC Campus, Snowbirds. White Rock was the site for our “Snowbirds Fly Vancouver, BC V6T 1V6 For CH.I.L.D.” event and we were overwhelmed with the Telephone: 604 736 0645 huge public turnout of over 60,000. Thank you to the City of Facsimile: 604 228 0066 White Rock for being such wonderful hosts and to the Email: [email protected] Province of British Columbia and Bombardier for generously Website: www.child.ca supporting the air show and a Children’s Reception with the Mission Statement Snowbird Pilots and Crew. To find a cure through research for children who suffer from the debilitating diseases And what glorious weather we have had for all our Golf of Crohn’s Disease, Tournaments! Golf For CH.I.L.D. was a tremendous Ulcerative Colitis and liver disorders. success, spearheaded by the Hadwin Family of Golf – Mary Parsons Volunteer Board of Directors thank you to Gerry, Brenda, Adam and Kyle! President & Chief Greg Anctil, LL.B. Executive Officer Gary Collins CH.I.L.D. Foundation This year’s CH.I.L.D. Foundation Doormen’s Dinner has been a joy to plan, as we honour hockey legend Pat Quinn Teresa Evans Scott Harrold as “Honourary Doorman of the Year”. Congratulations Mr. Ferzana Jamal, BSc., MBA, CIM Quinn! Your contribution to hockey in Canada has been Grace M. McCarthy, OC, OBC, LLD, phenomenal. DTECH, FRAIC (Hon.) George C. Magnus, OBE, BBS Carol Moldowan Working For A Cure, Mary Parsons Shannon Parsons, RN, BSN Red Robinson, D.Litt. MARY PARSONS Yosef Wosk, Ph.D., Litt.D., Th.M., O.B.C. President & Chief Executive Officer Volunteer Board of Governors The CH.I.L.D. Foundation Peter Armstrong Maury Corday Kirk Foley J. Lindsay Gordon A CANADIAN FIRST: Lyall Knott, QC Wayne Nygren B.C. SCREENING PROGRAMME Lui Passaglia, LLD John Plul FOR LIVER DISEASE IN NEWBORNS Don Ralston, CA Tracy Redies, MSc Early Detection of Biliary Atresia in newborns is crucial to quality of life, and, sadly, Michael S. Rogers more often the case, to life itself. As of June of this year, a programme implemented Lynne Triffon, CFP, RFP by the Province of B.C.’s Perinatal Services will bring timely awareness to families. Honourary Patron Dr. John A. Cairns, MD, FRCPC, FRCP, There is no single blood test for Biliary Atresia, thus stool colour is the main tool for FACC early detection. Dr. Richard Schreiber, Director of B.C.’s Pediatric Liver Transplant Scientific Research Advisory Council Program and Professor of Pediatrics at the University of British Columbia, has been Robert Armstrong, MD, MSc, PhD, FRCPC the force behind the implementation of ‘stool cards’: “Poor outcomes due to late Brian Bressler, MD, MS, FRCPC diagnosis and surgery of infants three months of age or older remain a problem John Cairns, MD, FRCPC, FRCP, FACC throughout Canada and elsewhere in the world. We need to build awareness among Brett Finlay, OC, OBC, PHD parents and health care providers about the need to look at stool colour as a disease Grace M. McCarthy, OC, OBC, LLD, indicator.” D.TECH, FRAIC (Hon.) Mary Parsons When a baby is discharged from the hospital, the parents are given a stool colour Aubrey Tingle, MD, PhD, LL.D, FRCPC, card to which they can compare their newborn’s stool. Chalk white, or clay-coloured FCAHS stools is an indication that very little or no bile is reaching the intestine. The card can Stuart Turvey, MBBS, DPhil, FRCPC also be downloaded from www.perinatalservices.bc We are determined to be successful. 3 NEW DISCOVERY ABOUT THE GUT’S IMMUNE DEFENSES MAY REVEAL THE CAUSES OF INFLAMMATORY BOWEL DISEASE Highlighted in Cell Host & Microbe, August 13, 2014 Reprinted in part with kind permission from Child & Family Research Institute Feature Article August 25, 2014 An important discovery about how our gut protects our bodies from dangerous infections may help scientists understand the causes of inflammatory bowel disease. “We know that every food-borne bacterial pathogen that we encounter tries to infect the cells that line CH.I.L.D. Foundation the gut, but until now it wasn’t clear how these cells defended against infection,” says Dr. Bruce Vallance, the senior and co-corresponding funds crucial equipment for author on the study recently published in the journal Cell Host and ground-breaking research. Microbe. “We’ve discovered that these cells defend themselves against dangerous bacteria using groups of proteins called “We intend to collect intestinal samples from inflammasomes.” IBD patients who are not responding to current treatments – grow their cells into gut balls, and Inflammasomes are groups of proteins that work together to trigger then test how these intestinal lining cells an immune response. Previously, scientists thought that the cells respond to bacteria and other intestinal lining the gut weren’t able to make inflammasomes because these challenges, in order to better define why these cells don’t produce a protein called caspase 1. Scientists believed patients have IBD,” says Dr. Vallance. “We caspase 1 was a necessary component of inflammasomes because hypothesize that the gut balls grown from IBD all known inflammasomes used capase 1 as a building block.