May is National Cystic Fibrosis Awareness Month

Hamilton Chapter www.cysticfibrosishamilton.com 2nd Edition 2007 Message from Vice President / Newsletter Editor The sun is shining, the birds are chirping, there is new life and growth all around us! Hello again and welcome to the 2007 Spring Edition of our newsletter. We have so many great events planned for the Spring/Summer season. We hope that we will see you out there with us. We’re determined to make this our best year to date with fundraising and promotion of the Hamilton Chapter. If you would like to become a volunteer with us this year, please let us know. It would be great to have more input from the families in the Hamilton area and we are always open to comments & suggestions. Let your voice be heard and please enjoy all we have to offer in the upcoming season! - Nancy Kernaghan Inside This Edition Stories of Interest……….….2 Clinic News …………..….…3 Dear Social Worker………..4 Past Events ……….....…….5 Upcoming Events…….……7 Take A Look…………...….11 Executive ……….………...12 May IS cystic fibrosis awareness month Stories of Interest Hal Soloff – “Hero of Hope” Hal, a retired attorney, teacher, and long-time volunteer for many local, state and civic organizations, has lived with CF since his diagnosis in 1959. As a 75-year-old person with CF, Hal is determined to live each day of his life to the very fullest. According to the CF Foundation's National Patient Registry, the median age of survival for a person with the disease is approximately 36.8 years* and living to 75 is extremely rare. Because Hal is one of the oldest living persons with CF, this award is especially gratifying to him, as well as his many friends and family. According to Carroll Jenkins, Hal's nominator for the Heroes of Hope Living with CF award and Executive Director of Cystic Fibrosis Research, Inc. (CFRI), Hal is realistically optimistic, and extraordinarily caring of his family, community and country. “Hal Soloff has acquired a wisdom through CF and life experience that enables him to speak freely, encourage others, increase public understanding of CF and improve the quality of life for those with CF.” Despite living with the many daily challenges of having CF, Hal maintains a remarkably joyful disposition. He is extremely grateful for his many gifts in life, including his wife, Phyllis, to whom he has been married for 50 years, and their son David and daughter Jennifer. Each day, Hal upholds the lengthy medical treatment regimen prescribed by his physicians, including inhaled breathing treatments, antibiotics, and pancreatic enzymes. Due in part to his CF-related diabetes, Hal is careful to maintain a nutritious diet and also makes regular physical exercise a priority. In addition to his satisfying work as a practicing attorney for six years and a teacher for 25 years at The Norwich Free Academy and Connecticut College, Hal has been a committed volunteer for various CF, government and civic organizations within his community, state and overseas. An enthusiastic political activist, Hal served as an elected delegate to a Democratic National Convention, and was a member of a Connecticut task force on higher education. Hal also enjoyed serving as the director of several community volunteer organizations including Jaycees and Kiwanis. Hal has lectured extensively at universities, schools and civic groups throughout the United Kingdom on behalf of the US Embassy, is an Associate at the University of London, and more recently created a CF internet support community. Hal's dedication to the CF community is of paramount importance to him. Hal's other passions include music, academics and most importantly, his family and friends. He credits his loving wife Phyllis for inspiring him to live the best life he can, without any regrets. * (In the USA)(Source: http://www.heroesofhope.gene.com/heroesofhope/this_months_hero.jsp) * UPDATE: Hal turned 76 years old on April 9, 2007!! HAPPY BIRTHDAY, HAL!! CCFF Hamilton Chapter Newsletter 2nd Edition 2007 Page- 2 Clinical News Research News At McMaster It is quite an exciting time for research in the Cystic Fibrosis Program at McMaster University. We are presently finishing off 1 clinical trial and starting 2 new trials in the spring. We are also involved in 2 investigator-driven studies through the CCFF. If you are interested please do not hesitate to leave Rosamund a voice mail message. 1) “Evaluation of a Decision Aid for Adult Cystic Fibrosis Patients Considering Bilateral Lung Transplantation” The objective of this study is to increase knowledge about future options, improve realistic expectaions and help to decrease decisional conflict in people with CF considering lung transplant. We are recruiting adult patients with an FeV1 under 40% predicted. There are 2 questionnaire’s spaced a year apart, to see if patients current choice is the same as it was 12 months ago. 2) “Detection of an Epidemic Strain of Pseudomonas aeruginosa in adult Canadian Cystic Fibrosis Clinics - Epidemiology and Clinical Implications.” We are into our second year of this study. We are trying to determine if a common strain of Pseudomonas aeruginosa exists in the sputum of Ontario Adult CF patients, and if so does this have an effect on the clinical course and prognosis. 3) “A Randomized, Double-Blind, Placebo-controlled, Multicentre Phase 3 Trial to Assess the Efficacy and Safety of Tobramycin Inhalation Powder (TIP) in Cystic Fibrosis (CF) Subjects.” This study is currently on hold. 4) “Multi-center, Multi-national, Randomized, Placebo-Controlled Trial of Azithromycin in Subjects with Cystic Fibrosis 6-18 years old, Culture Negative for Pseudomonas Aeruginosa.” We will be recruiting patients for this study in the spring time. 5) ”A phase IIa randomized, open label, dose response study to determine the optimum dose of dry powder mannitol required to generate clinical improvement in patients with cystic fibrosis”. So far we have recruited 12 patients for this study. No analysis has been done at this point. We should hear some interim results of this trial at the North American CF meeting in the fall. Rosamund Hennessey RN CF Research Coordinator Tel: 905 525 9140 ext 28720 Cell: 905 912 2212 (voicemail) CCFF Hamilton Chapter Newsletter 2nd Edition 2007 Page- 3 Dear Social Worker… Question from parent: Would the government help pay for therapy vests (or other products that aren't covered by insurance) if it was essential to the person's health? How do I go about getting a vest for my child? Answer from Maggie McIlwaine, registered physiotherapist (BC): I just wanted to let everyone know that the CF Foundation has just established a working group mandated to review what our policy should be on the use of the vest and other equipment. The group will look at evidence to support the use of the equipment as well as the financial side of things. The CF Foundation is still not advocating the use of the vest over any other ACTs and I am advising people to hold off on buying a vest until the working group comes in with their findings. Contact: Jennifer Dunlop at dunlopj@hhsc.ca … THE DISABILITY TAX CREDIT CERTIFICATE: DO YOU OR YOUR CHILD QUALIFY? Anyone who requires twice daily sessions of chest physiotherapy (life-sustaining therapy) qualifies for the Disability Tax Credit Certificate. This is a non-refundable tax credit used to reduce income tax payable on your tax return. Clinic Social Worker Jennifer Dunlop has copies of these forms, and can assist you with getting them filled out. Please ask to speak with Jennifer in clinic, or call her at 905 521 2100 Ext. 73667, or email her at dunlopj@hhsc.ca (NOTE: if it is too late for this year’s tax season, remember to ask for next year!) CCFF Hamilton Chapter Newsletter 2nd Edition 2007 Page- 4 The Starlight Starbright Children’s Foundation has produced an educational CD-Rom with easy-to-understand programs to help kids and teens understand different health conditions and procedures. The Explorer Series includes "Fitting CF into Your Life Every Day", which helps pre-teens and teens ages 10-15 learn how to fit a treatment plan into their lifestyle, and cope with psychosocial challenges that accompany cystic fibrosis. Kids will learn the importance of airway clearance techniques, exercise, diet, and taking enzymes and medication, as well as ways to talk about CF with others. The CD-Rom also includes programs about blood tests, IVs, and medical imaging procedures. To obtain a free copy in English or Spanish, please contact Diane Gallinger by e-mail at: diane@slsbcanada.org or by phone at: (905) 752-7827, ext 236 Past Events CF Hamilton Chapter Meeting February 23, 2007 L-R: Scott Kernaghan, Heather Summerhayes-Cariou, Nancy Kernaghan & Karen Gliddon It was a great honour to welcome Heather Summerhayes-Cariou to our chapter to speak about her new book, “Sixtyfive Roses: A Sister’s Memoir” and her experiences with CF. For those of you who missed this meeting, there will be an encore at the Medical Meeting, which will be coming up soon. We’ll keep you posted. CCFF Hamilton Chapter Newsletter 2nd Edition 2007 Page- 5 2007 Cystic Fibrosis Annual General Meeting Cornwall, Ontario, Canada April 26-29, 2007 This year’s AGM was held in Cornwall, Ontario. Karen Gliddon and Nancy Kernaghan were in attendance as delegates representing the Hamilton Chapter. This year’s theme was Mission: Possible, which was very fitting, as Karen and Nancy learned during the many (many!) meetings. There are so many new & exciting findings this year – including a possible cure for the b. Cepacia bug!! These discoveries are so important… and to help fund these research projects is why we need to continue to raise as much money and awareness about this disease as possible. There is REAL hope in finding a suitable control/cure for Cystic Fibrosis. On Saturday evening, April 28, the Cornwall Host Chapter held a “Celebration of Life” in the form of a huge birthday party for the delegates attending the AGM. It was a wonderful thing to learn that well over 50% of all Canadians with CF are now ADULTS and are living life in a positive and healthy way. It is a testament to have far we have come since the beginning of the Canadian Cystic Fibrosis Foundation. CF ADULTS, 2007 Nancy & Karen with fellow CF Adult James Tapankov (AB) Cathleen Morrisson, CEO of the Canadian Cystic Fibrosis Foundation, AGM 2007 CF Nurse Val Carroll & Nancy Kernaghan CCFF Hamilton Chapter Newsletter 2nd Edition 2007 Page- 6 Upcoming Events Directions to ZOOZ Registration: 9:00 – 11:00 AM At the Zooz If driving from Hamilton, Brantford & area: Drive straight south on the QEIW to Sodom Road; Turn right at Sodom exit and drive straight to Zooz.(on the right hand side) CCFF Hamilton Chapter Newsletter 2nd Edition 2007 Page- 7 Join CARSTAR on Saturday June 16th, 2007 for the Soaps It Up For Cystic Fibrosis National Car Wash. We’ll soap up your car for cystic fibrosis. You may even win an incredible California Dreamin’ vacation! See below for a list of the participating CARSTAR locations. The national event will see half of all proceeds raised go to the Canadian Cystic Fibrosis Foundation and half to a local fundraising group of the franchisees’ choice. CARSTAR’S participating campaign sponsors. Ancaster Ontario Auto Collision CARSTAR - Ancaster 605 Hwy # 53 E. (905) 648-6282 Hamilton Midtown CARSTAR Collision Centre 77 Ferguson Ave. S. (905) 525-9515 Hamilton Midtown CARSTAR Collision Centre (West) 1635 Main St W (905) 540-9111 Stoney Creek Ontario Auto Collision CARSTAR - Stoney Creek 498 Arvin Ave (905) 664-1441 Brantford Ontario Auto Collision CARSTAR - Brantford 103 Copernicus Blvd (519) 753-8957 Hamilton Ontario Auto Collision CARSTAR - Gage 322 Gage Ave N (905) 549-4602 Hamilton Ontario Auto Collision CARSTAR - Rymal 1124 Rymal Rd E (905) 383-3700 PLEASE CALL A CARSTAR IN YOUR AREA TO VOLUNTEER!!!!!! CCFF Hamilton Chapter Newsletter 2nd Edition 2007 Page- 8 Arbourlife Counselling Services Presents “LOVE, LOSS, AND SURVIVAL” with Heather Summerhayes-Cariou author of “Sixtyfive Roses: A Sister’s Memoir” Wednesday, June 27, 2007 St. Luke’s Anglican Church, Burlington, Ontario 7:15 – 9:15 pm Tickets $20 available from St. Luke’s Anglican Church, Burlington * St. Paul’s United Church, Oakville * Arbourlife Counselling Services, Burlington * Canadian Cystic Fibrosis Foundation, Hamilton * Different Drummer Books, Burlington * part of the proceeds will be donated to the Canadian Cystic Fibrosis Foundation ***Please call Karen or Nancy for tickets*** 6 Annual Stuchberry Golf Tournament th Saturday, August 17, 2007 SAWMILL GOLF COURSE 856 Sawmill Road, Fenwick, Ontario Fees: $125.00 per person (includes green fees, cart rental, dinner, prizes & a chance to win at our specialty holes & mystery prizes) $105.00 per person (includes green fees, cart rental, dinner & prizes) Tee off time is 1:00 pm For more information, please contact Paul or Rachel Stuchberry at (905) 984-2119 or via e-mail at: prstuchberry@cogeco.ca Or complete registration form on next page and mail/email. CCFF Hamilton Chapter Newsletter 2nd Edition 2007 Page- 9 6th Annual Stuchberry Charity Golf Tournament for Cystic Fibrosis Registration Form For Directions to the golf course please visit: www.sawmillgolf.com/directions.htm#3 Hole sponsorships can be purchased for $100.00, $300.00, $500.00 and $1000.00. . HOLE SPONSORSHIPS Name of Company/Person: Address: Amount: Tax receipts will be issued as per information above. For further information on how to help sponsor this event, please contact Cor or Chris VanderMeer at (905) 935-8992 email cvandermeer@cogeco.ca or Paul and Rachel Stuchberry at (905) 984-2119 email prstuchberry@cogeco.ca Complete the following form below and return it with payment to: Paul and Rachel Stuchberry; 34 McCaffery Cres.; St. Catharines, ON; L2S 3Z6 If you wish to receive a tax receipt for a portion of the entry fee, please ensure name and address are filled out below. Thank-you. PLAYER #1 NAME: ADDRESS: PLAYER # 2 NAME: ADDRESS: MC/VISA/AMEX #: EXP DATE: E-MAIL ADRESS: PLAYER # 3 NAME: ADDRESS: MC/VISA/AMEX #: EXP DATE: E-MAIL ADRESS: PLAYER # 4 NAME: ADDRESS: MC/VISA/AMEX #: EXP DATE: E-MAIL ADRESS: MC/VISA/AMEX #: EXP DATE: E-MAIL ADRESS: Please make all cheques payable to The Canadian Cystic Fibrosis Foundation CCFF Hamilton Chapter Newsletter 2nd Edition 2007 Page- 10 TAKE A LOOK… BREATH - Salz is a boy afflicted with a strange disease -- he coughs and coughs and cannot catch his breath. The only way he can stay alive is by doing things that make him an outcast: joining a coven, throwing himself into a handstand when the fits overtake him, avoiding the ale that his brothers and all the townspeople drink. Salz lives in a time of superstition and fear, in the medieval town of Hameln. This summer his barebones existence has been more fearsome than ever. Salz's father and brothers are affected by horrifying fits. The rest of the townspeople are gripped by a plague of madness. And the entire town is visited by a pestilence of rats -- rats that crawl in their soup bowls, swarm in their sick beds, jump into their babies' cradles. Only Salz remains unaffected. But is that because he is innocent? Or is he the devil himself? By: Donna Jo Napoli – Atheneum Publishing, 2003 ISBN-10: 0689861745 ISBN-13: 978-0689861741 HAVING CF STINKS!! Skelly, a stuffed skunk made for the Edmonton & Northern Alberta Chapter, was created because "having CF Stinks". It was named for volunteer Bill Skelly, founding chairman of the 65 Roses Sports Club in Edmonton. Skunks are available for $15.00 each. To purchase your skunk, please contact Yvonne at ecfs.fundraising@telus.net or call (780) 466-2265. Many thanks to the Kin Clubs of Edmonton who funded this project so that 100% of dollars raised will benefit CF research. CCFF Hamilton Chapter Newsletter 2nd Edition 2007 Page- 11 Receiving the Newsletter via E-mail Please make sure we have your correct E-mail address by sending an e-mail to kernaghan_nancy@yahoo.ca with “newsletter” in the subject line Note: Please do not forget to let Nancy know when you have changed your e-mail or mailing address! Hamilton Chapter Executive Karen Gliddon Chapter President : (519) 717-8898 Fax: (519) 753-9584 (please call first before sending fax) Email: kgcf@sympatico.ca Nancy Kernaghan Chapter Vice President/ Newsletter Editor : (905) 521-1381 Email: kernaghan_nancy@yahoo.ca Sylvia von Ellm Treasurer : (905) 304-6007 Email: svonellm@kpmg.ca Judy Henry Kin – CF Liaison : (905) 563-7576 Fax: (905) 563-6017 Email: jtcurecf@sympatico.ca Jackie Moynagh Memorial Cards : (905) 335-1950 Email: themoynaghs@cogeco.ca Scott Kernaghan Shinerama Liaison : (905) 521-1381 Email: scott_kernaghan@yahoo.ca Helen Colvin CF phone- General Inquiries : (905) 659-1555 Mailing Address: CF HAMILTON CHAPTER 1300 Garth Street P.O. Box 79005 Hamilton, ON L9C 5V0 We Need Your Input! Feel free to contact any of the above executives. CCFF Hamilton Chapter Newsletter 2nd Edition 2007 Page- 12