Fall 2010 Congratulations!!!! participated in the two day tournament Hope you had a great summer and you’ve which marked the first fundraiser for relaxed a bit after our very busy, but productive spring and summer. We’re happy Cystic Fibrosis. TAPNL had great support to say you stepped up in a big way!! Between from players and we`re happy to share it April and July, our chapter has raised $42,000! won`t be their last tournament as they THANK YOU for every ticket sold, prize plan to work with the folks at the Eastern donated, volunteer hour given, friend and Newfoundland Chapter to make it an family dragged to an event and your ever- annual event! Thanks so much to Barry lasting and never-ending support. Without you for all his hard work on this event. we could never be able to raise this much money to support CF research and support our clinics. Below are some of the awesome events that allowed us to achieve this monumental accomplishment: CarStar’s Soaps it Up: Chapter members and CarStar employees worked together on Saturday, June 12th TAPNL Fundraise for Cystic for CARSTAR's 7th annual Soaps it Up Fibrosis: for Cystic Fibrosis National Car Wash. We raised $1,300 locally and had a ton of fun. A special thank you to Ray Cranford from CARSTAR and his staff who hosted the car wash and Enterprise Car Rental who donated hotdogs and hamburgers. Dave, Lena, Bernadette, Dennis, Barry, Kim, Harold, Shawn, Mike & Shane all helped to raise money for Cystic Fibrosis The Pool’s Amateur Tour TAPNL held a fundraiser for the Eastern Newfoundland Chapter of the Canadian Cystic Fibrosis Foundation at Westside Charlies in Mount Pearl on April 17 & 18. Players of Chapter members and CarStar employees worked hard washing cars to raise different ages and skill levels money for C.F. The carwash ticket prizes were won Matthews for throwing the first pitch of by: the tournament. 1st Prize - Trip Dominican Republic - James Earle from Dalmeny, SK nd 2 Prize - $1000.00 Gift Card for any retailer - Dan Ponsen from Hamilton, ON 3rd Prize - Nintendo Wii Prize Pack - John Corcoran from St. John's, NL Aiden Matthews prepares to throw the 1st pitch while Dad (Keith) and Denise Murphy from the organizing committee look on. Great Strides: Aiden Matthews from St. John’s, who has C.F, worked Sunday, May 30, was the day to take hard to make sure every car was clean & shiny. “Great Strides” to find a cure or control for Cystic Fibrosis. This year’s walk was Throughout Canada, more than $117,000 another huge success. Thanks to was raised from this year’s car wash everyone who came to the various walks campaign. Thanks to everyone who across the province. In total seven volunteered to wash cars. It was a fun communities held walks raising close to day with lots of cars washed and lots of $15,000.00 hard work! Provincial Softball Tournment: On June 11th and 12th Provincial Government employees once again gave up their weekend to play softball, eat hotdogs and even drink beer to raise money for C.F. research. And they did it The 2nd Annual CBN Great Strides walk proved to be a great success! With over 30 people participating, our area was able to raise over $2200 in support of Cystic Fibrosis!! A huge THANK YOU goes out to the participants and to Kelly and Darren Sheppard for with great enthusiasm!! We actually ran organizing this walk. We appreciate all their hard work in raising much needed funds. We look forward to an even bigger turn out next year. out of both beer and hotdogs. This weekend usually bring in about $2500 so Beside here in the capital city, walks were it’s a very worthwhile event. Thanks to held in Goose Bay, Grand Bank, CBS, the organizing committee, Edna’s sisters Goose Bay, Habour Breton and Deadman's for staffing the canteen and Aiden Bay. While this year’s walk in St. John’s had a Strides” for their friend. Everyone little smaller turn out than last year, enjoyed treats and refreshments with participants ate lots of hotdogs and had prizes drawn after the walk! A couple of tons of fun. Special thanks to Erin, Anna fun days were had by all and more and Josh for doing the registration desk importantly, approximately $4000.00 was again this year and entertaining the kids raised to help find the cure!! with a fish tank!!! Bailey Dooley is lucky to have so many supporters in her small community of Happy Valley-Goose Bay. The Nolan clan: Glen (adult CF) and his wife Renee with their twins Grace and Tyler along with his brother Gerry with his wife Bernadette with their boys Jeremy (who has CF) and his brother Adam. The Nolans are regular participant at Great Strides in St. CF Concert in Carbonear: John’s. The FRIENDS OF CYSTIC FIBROSIS in the Carbonear area held their 3rd Annual CF Benefit Concert at the Princess Sheila NaGeira Theatre in Carbonear on May 8, 2010 and was again an overwhelming success with total receipts for the concert amounting close to $11,000.00. A complete sellout at the show saw and heard an outstanding array of talent that was on display with the following groups performing - Peter and Friends - Team Dale was a new team to participate in Great Strides. The team was organized by Peggy Walsh and her daughter Regan in memory of Dale. Many of Dale’s family and The great Jimmie Linegar - Rural Roots - friends took part and this team raised an incredible $2300.00 Albedo and the ever popular Jacobs Passage. The President of The Nfld and The RCMP was kept busy in Happy Valley Labrador Chapter for the CF Foundation, Goose Bay late in May...it was a beautiful Betty Sheppard, was on hand and thanked sunny Sunday when the RCMP escorted Dan & Helen Green and their committee almost 60 people through the streets of of Glenys Tuttle, Angeline Mercer and the town to raise money for Cystic SueLynn Green for another great effort. Fibrosis. The next day, they did it all The total receipts for the three concerts again, when they escorted Bailey Dooley, to date have now topped $30,000.00! who has CF, and her friends, classmates Just a tremendous achievement! Many, and all of Queen of Peace Middle School many thanks to the organizing committee during their efforts to take “Great for their terrific work on this event. Ride for the Breath of busy time and we really appreciated your support and efforts. We should all take Life: great pride in the good work we have The 2nd Annual Glenn Kennell Memorial done. So enjoy the summer and get "Ride for the Breath of Life" was held ready...because the fall is approaching July 3rd. 80 bikes left St. John’s and fast and our new projects are in the made their way to Shearstown and back planning stages!! to raise money for our chapter. Pledges totalled $16,740!! An incredible accomplished for year 2!! Upcoming Projects!!! Dance: On November 6th, the CMC’s will be hosting their 3nd dance of the year to raise money for CF. It’s going to be 80’s music. It will be held at the Knights of Columbus Hall on St. Clare Ave. Doors open at 8:30 pm. Ticket are $10.00 each and are available from Betty at 777-2219 or Lorraine at 777-4532. Myron King took advantage of the beautiful day to take a ride and raise money to support the chapter. Shine-a-rama: It’s Orientation Week in the 1960s. You’re a student leader and looking for a way to have fun and help others. So you take a pair of someone’s scruffy shoes, clean them up and ask for a donation. Dozens of shoe shines later, you and your friends have raised $1,300. It’s that simple – and it’s been working for 46 years. An event called Shinerama – now Canada’s largest post-secondary CMC club turn out in large numbers to support our 2nd annual Glen Kennell school fundraiser. In 2009, 35,000 Memorial Ride for the Breath of Life. students at 60 university and college One motorcycle club, the Canadian campuses across Canada raised $988,069 Motorcycle Cruisers (CMC’s) went way for cystic fibrosis research. This year’s above and beyond this year. Not only did national goal is $1 M!!! Since 1964, they show up in big numbers to take part shiners have raised more than $20.5 in the ride, they held 2 dances and a BBQ million by shining one pair of shoes, or one ticket sweep to raise extra funds for the car, by selling one raffle ticket, one hot ride. In addition to their pledges - this dog or burger at a time! year they contributed a cheque for $6500 from their fundraising efforts! We have three campaigns happening across the province again this year... These are most of our projects that we Here are the dates for each area: held over the spring and summer...it was a Memorial University of Newfoundland - Betty know if you’re interested in taking September 10 some tickets... as you can see above, our Sir Wilfred Grenfell College - September profit margin on these tickets is terrific. 17 & 18 We virtually have no expenses!!! We’re Western Regional School of Nursing - hoping to have tickets late in September September 18 or early October...So sell, sell, sell these So keep an eye out for these hard working, dedicated students and support their are a great fundraiser! efforts!! Quilt Draw: Now we have tickets out on Card Party: Card party is set for a beautiful handmade quilt and hope November 18th at Knights of Columbus on chest. Betty has a few more of these Greenwood Ave (off Topsail Rd). Games tickets so if you can help out and sell a will at 8:00 pm with lots of great prizes. few more, let her know. So card players start putting your tables together and plan on a night out. Atlantic Region Meeting: On the weekend of October 23 – 24, chapter members from across Atlantic Canada will Hockey Ticket: Last year’s ticket sweep meet at the Sheraton Hotel on the hockey weekend was so successful, Newfoundland to hold their annual we’re doing it again. This year, the meeting. It’s a time for planning weekend will once again include three collaborative events, updating members hockey games and a Toronto Raptors on what’s happening in research and game! The schedule is as follows: sharing experiences. Everyone is welcome Tues ,March 15th, 2011- Ottawa vs. Pittsburgh to attend. The agenda for the weekend Thur, March 17th - Montreal vs. Tampa Bay will include a medical speaker (Elizabeth Fri, March 18th – Toronto Raptors Cowley, Dalhousie University who a CF Saturday, March 19th - Toronto vs. Boston researcher), a workshop on leveraging partnerships and implementing the new TD Bank is back on board as a sponsor name and logo, with more topics to be donating VIP tickets to all games; Air confirmed. If you’re interesting in Canada has confirmed they will again be attending the weekend or any portion of donating the airline tickets. Delta Hotels it, give Edna a call at 782-7602 or email: is back donating the 5 night hotel firstname.lastname@example.org. package. Ticket printing is again complimentary. We are again printing 10,000 which will be sold for $10.00 each across the four Atlantic Provinces. In addition, Boston Pizza is joining our sponsors this year and will be selling our tickets at their 16 stores across Atlantic Canada to help us with ticket sales. These tickets are great stocking stuffers for Christmas and sell really well. Let Thanks Grant!! This award honors not only Dale’s life of dedicated efforts on behalf of our CF chapter and his work with the CF adult Several months ago I received an e-mail from Grant Handrigan telling me he was planning to run the Tely 10 race. This Peggy, Regan and Dale alone is an impressive accomplishment but Grant decided he would start a blog about committee, but also his many friendships his training and collect donations and ongoing support of all who has CF. /sponsors from his family, friends and We were so proud to present this award followers, which he wanted to donate to to Dale’s family at the St. John’s Great CF. He e-mailed again this week...he Strides walk. It was extremely well placed an impressive 2nd place in the race deserved and Dale would have been and raised $500.00 for CF! Thanks so extremely proud to have been honoured much Grant. by the foundation in this way. PJ Shea, a CF adult and close friend of Dale’s had the honour of presenting the award to Honoring Dale: Peggy and Regan. Dale’s mom and dad (Mary and Leo) were also in attendance. The Summerhayes Award honours a Sadly, Dale lost his fight with this illness person with cystic fibrosis who has in November, 2009, six months post lung demonstrated an exceptional commitment transplant. He is sadly miss. to the CF cause for a minimum of three years. The Summerhayes Award is not presented unless a suitable candidate is nominated. This year our chapter, along with the adult CF committee nominated Dale Walsh for this prestigious, national award. I’m happy to say that Dale was awarded the Summerhayes Award, posthumously, at our national meeting held in Ottawa in May. Peggy and Regan accept the Summerhayes Award from PJ Shea on Dale’s behalf. The Vest Study This study is open for recruitment until September. Inclusion Criteria: In recent years the wave of technology 6yrs old & proficient in performing has swept over almost every aspect of PFTs our lives. The drive to provide care for Confirmed diagnosis of Cystic Cystic Fibrosis has been taken up here as Fibrosis well. There have been a growing number FEV1> 45% predicted (Wang Scale) of discussions about using a vest for Clinically stable chest physiotherapy. Like all new Willingness to adhere to technologies, the spotlight shines on a prescribed treatment novel product on the market and with it comes a large price tag. The questions to Exclusion Criteria: be answered are: “Does it work better ABPA or B. Cepacia within last than what I do now?” and ”Is it worth it year for me?” Active treatment for NTM A group of Physiotherapists in British Use of IV meds within 14days Columbia and Ontario are endeavoring to Use of systemic corticosteroids answer those questions. They have within 14 days designed a study to objectively test two Pneumothorax in past 6months forms of airway clearance head to head. Haemoptysis .20ml on 2+ occasions Our clinic is one of 14 sites across Canada within past 30 days participating in a study commonly referred to as The Vest Study. Monies For more information contact Stephanie were granted from the Canadian Cystic Spencer, Physiotherapist, Adult CF Clinic Fibrosis Foundation to complete the 777-4389 or 782-8133 (pager) or study: Multi-centre, long-term Stephanie.email@example.com comparative trial of high frequency chest wall oscillation (HFCWO) versus positive expiratory pressure (PEP) in the treatment of cystic fibrosis. Essentially two groups of 85 patients each will be matched and randomly selected to receive either a PEP or HFCWO protocol as their option for physio for one year. Subjects will be followed at regular intervals for information on health status and where possible this will be incorporated into a clinic visit. CMC’s we raised roughly $2600 at the May Dance!!!!!! CF Families We need your help!! The Eastern NL Chapter of the CCFF in partnership with the CMC’s will be holding an 80’s Dance on Saturday We need Prizes, November 6. To fundraise we will be holding our glow bracelet sales again! Prizes, Prizes!!!!!! We are hoping to sell roughly 200! ($1000!!!!) Here is where we need you guys to pitch in. We all have items (new of course) lying around the house that we were given as xmas gifts, b-day gifts or simply we bought because it was on sale. So dig into your closets, ask your neighbours and friends, Hit the discount areas at the local malls and get us some prizes. When you come to clinic drop During our May Dance with the them off to Betty or Susan. Canadian Motorcycle Cruisers ….. We You can also give Betty or myself a call tried a new fundraising idea!!! and we’ll arrange a pick up or figure Glow Bracelet Sales something out. Thanks again. Betty 777-2219 Lorraine 777-4532 For $5.00 party goers we are able to buy a glow bracelet. Every bracelet had a number that corresponded with a prize. All prizes were kept Hush! Hush! And ranged in value from $5.00 to Welcome Aboard: $150.00 Welcome to Drs. Joe Lockyer and Jamie We were able to sell 65 bracelets with Farrell who recently returned to St. very little effort and the crowd thought John’s after studying in Ontario. Both it was a great bit of fun! have specialized in adult respirology and will be seeing the adult CF patients in As you may have already heard the clinic and during admissions. Both Canadian Motorcycle Cruisers (Chapter physicians are excited to be part of our 024) have gotten on board as a major CF care team and each brings their own contributor and sponsor of our Annual individual area of expertise. So, adults Glenn Kennell Memorial “Ride for the get back to clinic and help these Breath of Life” In conjunction with the physicians get up to speed on your CF care. They are excited to be here and together with other phages or antibiotics want to work with us to improve adult CF to eliminate BCC more effectively. care here in the city!!! Did You Know: The CCFF fund many different types of research because you never know where answers (From left to right, Euan Thomson , Dr. Jonathan Dennis, Karlene Lynch, Diana Semler, may come from!!! Here are two very Mandi Goudie (technician), Sarah Routier, and Gerardo Juarez) interesting research projects you may not The ultimate objective of this therapy is have heard of: longer and healthier lives for people with cystic fibrosis. Phage Therapy Stem Cell Therapy “Bacteria-eating Viruses: Alternatives to Antibiotics” “Stimulating Adult Stem Cells to Produce CFTR” Burkholderia cepacia complex (BCC) is a group of bacteria that can cause life- Dr. Thomas Waddell at threatening respiratory infections in Toronto General Hospital is individuals with cystic fibrosis. BCC has investigating whether adult become highly resistant to antibiotic stem cells obtained from bone treatment, leaving researchers searching marrow can replace cystic for alternative therapies. fibrosis (CF) airway cells. The airway cells of individuals with CF produce Dr. Jonathan Dennis of the a non-functional CFTR protein. Under the University of Alberta has right conditions, bone marrow cells can be had promising laboratory stimulated to produce several of the results using phage therapy proteins found in airway cells, including targeting BCC. Phages, or CFTR. bacteriophages, are tiny viruses that target and kill specific bacteria. This Adult stem cells are unspecialized cells treatment strategy was originally found throughout the juvenile and adult discovered by a Canadian scientist early body that can create specific cell types. in the 20th century. They multiply by cell division to replace dying cells and damaged tissues. Dr. Dennis’ research team is studying the phage DC1 and its enzyme product. This Dr. Waddell is studying how to best enzyme is able to penetrate the outer deliver adult stem cells to the lungs and layer of BCC, and biofilms containing BCC, stimulate them once delivered. The aim of causing the bacteria to become more this research is to correct the basic vulnerable and easier to eliminate. The defect in cystic fibrosis lung cells. DC1 phage or enzyme could be used Interesting Hey????