DREAM MAKER
SOUTH SASKATCHEWAN CYSTIC FIBROSIS
NEWSLETTER
SEPTEMBER2014
SSCFC EXECUTIVE:REGIONAL DIRECTOR:
President: Mike & Cara Weger- 306-842-2486Rita Steiner
692 Barber Cres., Weyburn107 McIntosh Street North
Email: egina, Sask. S4R 4Z8
Vice-Pres: Wade Grocott – 306-691-0706Phone: 306-924-0602
Treasurer: Laurie Larocque – 306-949-5434Email:
43 Clarke Street, Regina S4T 6S9
Secretary: Donna Wilchuck – 306-545-7813South Sask. Mailing Address:
()PO Box 721, Regina S4P 3A8
Cystic Fibrosis Line: 306-949-1515
REMINDER: Our South Saskatchewan Cystic Fibrosis Website is
If you need any information on the website, please contact Wade & Richelle Grocott at 306-691-0706.
Our next meeting is being held in Weyburn at Mike & Cara’s home, 692 Barber Crescent, on Thursday, October 9 between 6-6:30. Mike will be cooking up a storm for any Chapter members wanting to come to the meeting. If you are interested, email as we will be putting a carpool together, leaving around 5pm.
Infection Control Policy – Canadian CF Foundation
It is the policy of the CCFF that persons with CF who know they have tested positive* in the last 12 months for B. cepacia complex and/or Methicillin-resistant Staphylococcus aureus (MRSA) shall not attend, in person, CCFF meetings and events where persons with CF may be in attendance. Individuals without CF, who are known to be colonized with MRSA in the nasal cavity or on the skin, but who are not actively sick may attend. Persons with CF should be aware that some individuals may be in attendance at a meeting or event without knowing that they have B. cepacia complex, MRSA or other potentially harmful bacteria. These bacteria can be passed from one person to another by touch, coughing or sneezing. Some individuals with CF can experience a serious decline in health if they become colonized with B. cepacia complex. It is believed that persons with CF face a relatively low risk of acquiring B. cepacia complex or MRSA by attending a meeting or meetings at which other individuals with CF are present. However, persons with CF are strongly cautioned to avoid prolonged, close physical contact with each other, and to wash their hands frequently. Anyone with CF who attends a meeting does so at his or her own risk, and the CCFF accepts no responsibility for any risk to health involved in attendance, or in any social contact between persons with CF. Please contact your CF clinic director or the Foundation's office for further information.
CO-PRESIDENT’S MESSAGE – MIKE & CARA WEGER
Hopefully everyone had a great summer and had a chance to soak up lots of vitamin D on all those sunny days over the past few months! We were happy to meet with everyone at our Chapter meeting on September 15th and it was great reviewing our May fundraising success! Thank you once again to everyone who supported Cystic Fibrosis Awareness month this past May. It was wonderful to see so many people come out to once again to support theRide for the Breath of Life and the Great Strides Walk. Remember, if you are a Facebook user, please find our page and use it to share information, watch for updates on Chapter events, research, fundraising goals and to reach out to other parents, family or individuals with Cystic Fibrosis. Our page has been a little quiet over the summer, but would like to continue sharing as much information as we can going forward. Just a reminder that we are hosting the Chapter meeting on October 9 at our home, 692 Barber Crescent in Weyburn and would love to see many Chapter members come out, remember Mike is doing the cooking so come for a visit & free meal!!
REGIONAL REPRESENTATIVE’S REPORT – RITA STEINER
The review of this position is nearing completion and will hopefully wrap up by the end of this year. Once this happens, we anticipate needing approval from the general membership of Cystic Fibrosis Canada for any changes that affect our by-laws. At the Annual General Meeting the end of April, approval was granted to have the current Regional Representatives remain until a new ‘Volunteer Advisory Committee’ is in place. This allows the general membership of Cystic Fibrosis Canada to maintain a volunteer leadership structure that will continue to communicate between the ‘grassroot’ members and the National Board.
On September 1, Saskatchewan became the 3rd Pan Canadian pricing Alliance province to add Kalydeco to their drug formulary. This is fantastic news for those patients in Saskatchewan that have the rare specific G551D, G178R, S549N, S549R, G551S, G1244E, S1251N, S1255P, G1349D or G970R mutation. This is a pill taken twice a day with fat-containing food, helps the protein made by the CFTR gene function better and, as a result, improves lung function and other aspects of cystic fibrosis such as increasing weight.
Although this medication will only be helping a small number of the general population with cystic fibrosis, there is hope that it will lead to more drug therapies that will help all the remaining patients fighting this terrible disease every day.
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COMMITTEE REPORTS
Mother’s Day Tea Campaign – May - Irene & Members
We would like to extend a special thank you to all the Chapter members that participate in the Mother’s Day Tea Campaign held in May of each year, especially Betty Turner – in total this project raised over $4,700. Thank you.
Ride for the Breath of Life Bike Run –May 24, 2014 – Gord & Mavis Johnson
This year marked our 30th Annual ‘Ride for the Breath of Life’ motorcycle fundraiser. It was a sunny and beautiful day, we had approximately 180 bikes with 200 participants and raised over $38,000. We are so thankful for the committed fundraisers and supporters of the run.
Thanks to Investors Group for sponsoring the food donation and postage. Also a special thank you to Regina Motorcycle Association for cooking up the burgers.
Thank you to Lorna McEwenfor being our guest speaker this year. Thank you to all our volunteers, CF families and friends for their help. Without your help, this event would not be a success and your hard work and dedication is greatly appreciated.
Unfortunately, Gord & Mavis Johnson, and their family have helped organize this event for 28 years, will be stepping down this year. The Chapter wants to thank them VERY MUCH for all their hardwork and dedication for the Bike Run, and hopefully we will be able to fill their shoes, and continue the bike run for years to come. If you are interested in helping out with the Bike Run, please call the CF Line at 306-949-1515 or email . We will be having a meeting in November to come up with a plan!!
2014 Great Strides ™ Walk – May 25, 2014 – Rita Steiner
This marked the 10th walk since Cystic Fibrosis Canada took over from HBC. We moved to a new location on the east side of Wascana Park and enjoyed a great day for a walk in the park. With over 300 participants the walk in Regina raised nearly $110,000. One of our families in Craik was the lucky winner of the ‘Rider’ beverage fridge. And our top team in the walk was once again Team Teresa with over $42,000 raised.
The Swift Kinsmen and Kinettes once again hosted the walk in their community and raised over $25,000. And new this year, we were pleased to have 2 new walks - one in Carnduff hosted by Kelly Loustel and friends raising $14,000 and one in Estevan hosted by the Estevan Kinettes raising $2,500. These are great folks pitching together to help us on the journey to find the cure or control.
The 2015 walk will be held on Sunday, May 31st. Book this event on your calendar, lace up your runners and join us for another walk in the park.
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Craven Country Jamboree – July 9-13, 2014 –Rita Steiner
Finally a year without rain during this event – what a treat! This year, we were able to attract 30 volunteers to work with me. As usual, this was a great crowd watching experience and lots of fun interacting with the young people that were coming to our booths for wristbands. For those that don’t know, we were inspecting identification for those between the ages of 19 to 25 and attaching wristbands that would allow them to be served alcohol in the beer gardens. We raised an amazing amount of approximately $12,500 which will be presented to the Chapter at the end of January.
If you are interested in checking out the jamboree, like country music and watching the crowd, consider volunteering at next year’s jamboree. By working 3 shifts, you will be entitled to a free weekend pass, food and a beverage during your shift, camping privileges and lots of fun interacting with the patrons while working your shifts. The dates are July 8 to 12, 2015. Please contact Rita Steiner at 306-924-0602 or .
Pottle Golf Tournament – September 14, 2014 – Crystal Lake
Gary & Willie Pottle organized a golf tournament at Crystal Lake on September 14, sold out and raised $5,000. Thank you so much to Chad, Susan, Gary & Willie Pottle for organizing this great event.
Advocis Golf Tournament – Tor Hill – September 4, 2014 – Rita Steiner
The day started with rain showers in the morning but stopped in time to enjoy a great afternoon of golf. For the second year in a row, the tournament was sold out and raised over $18,000. This was the best year so far for the tournament and thanks go to Tyler Zaba, Joel Gartner, Nathan Smith and Donna Burnett.
Shinerama – Rita Steiner for Lucas Bjorgan
Lucas Bjorgan a second year University of Regina student accepted the challenge to take on reviving this campaign on the campus. He attended the Annual Shinerama training hosted by Cystic Fibrosis Canada in May where he got lots of information about running a campaign and came back excited to get it going. Saturday, September 6th, his committee organized a ‘Shine Day’ in downtown Regina and raised $465. On Thursday, September 18, they organized a video game tournament and raised another $1,000. All in all when he includes what has been raised on-line, he expects to come very close to his budget of $2,000. Way to go, Lucas! And thanks for getting a campaign on the U of R campus again.
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Dream of a Diamond… Dream of a Cure Ladies Night Out – Oct. 3, 2014 – Donna Wilchuck
We will be hosting our 9th “Dream of a Diamond … Dream of a Cure Ladies Night Out” at the Delta Regina Hotel on Friday, October 3, 2014. Please note it is a month earlierthis year. The price is $60 per person which includes a beautiful buffet dinner withmany raffle draws. We are also selling reserved tables of 8 for $450 and corporate tables of 8 for $500. This year is going to be spectacular - we are having some great entertainment, Amy Nelson will be performing, as well as our Guest Speaker will be Noel Hamilton, spouse of Alison Hamilton, a CF adult – who recently celebrated the birth of their beautiful daughter. Once again, there will be a special ice cube diamond raffle for a TWO beautiful diamond necklacescourtesy of Olson Goldsmiths Inc.. Tickets are still available, you may contact three different ways: PHONE: MaryAnn at 306-586-2158;EMAIL: or FACEBOOK: CF Dream.Also you may email Donna at the CF email .
Ottenbreit Meat Order – October 17, 2014 – Donna Wilchuck
Due to Ottenbreit Meat raising their prices DRASTICALLY, our Chapter had to raise our prices. Our next Ottenbreit Meat order will be delivered on October 17, 2014 to Donna’s house, 290 Hodgins Crescent, Regina. If you are interested, please either email Donna at or call 306-545-7813 byOctober 6, 2014 with your order. Our next order will not be till February, 2015. A revised order sheet is attached at the end of the newsletter.
Prairie Regional Meeting – October 17-19, 2014 – Rita Steiner
Our South Sask Cystic Fibrosis Chapter will be hosting the Prairie Regional Meeting for cystic fibrosis. Although, each chapter attending is allowed only 2 paid delegates, the meeting and social are open to all that want to attend. The meeting is being held at the Sandman Inn on the east side of Regina behind Moxie’s. Your only cost would be the meals provided (lunchbreaks) – approximately $30/pp. I would like all our families and friends in Southern Saskatchewan to consider attending this meeting. It’s an opportunity to hear what is happening nationally and regionally, a chance to meet other families and share our experiences. Please consider attending. A separate meeting notice is being prepared and will be sent out shortly.
Thanks again for allowing me to be your Regional Representative.
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Montreal Canadiens Alumni Game – November 15, 2014 - Margaret Manz,
Queen City Kinettes
Miller Thomson is proud to present the Kinettes for CF Hockey Game Fundraiser with the Montreal Canadiens Alumni Team in support of CF.
The Regina Queen City Kinettes are hosting the hockey Game Fundraiser which will be held on November 15, 2014 at 2pm at the Cooperators Centre, 1700 Elphinstone Street.
Tickets are:
$100 VIP (VIP seating at the game and the opportunity to meet the Alumni Team at the VIP reception following the game)
$40 General Admission
We do not have the tickets in hand yet (should have by Oct.3) but if anyone is interested they can email .
Dreams Come True–A Children’s Royal Ball–March 7 & 8, 2015–Krystal Ulmer
Since the First Annual Royal Children’s Ball was such a HUGE success, we are having our Second Annual Royal Children’s Ball – two days – March 7 at 4:30pm and March 8 at 11am, both at Hotel Saskatchewan Radisson Plaza once again. Tickets have increased to $50/pp, and will go on sale November 9. Once again we have some great sponsors on board: Lite 92.1, CTV; Wascana Florists; Freelense Photographers; and Hillberg & Berk. The raffle this year is sponsored by Gortex Construction, and will be a one of a kind custom built playhouse! NEW THIS YEAR – VIP Royal Table – November 1 via phone – one week before regular tickets go on sale - $750 for 10 tickets, this gets you a table reserved with your friends, a princess theme table and a princess will sit at your table – there are only 12 of these tables available at each event. For further information, please email or call the CF line at 306-949-1515.
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OTTENBREIT MEAT ORDER
PRODUCT / COST / ORDERSGrayson Smoked / $28.00/5 lbs / Increase
Grayson Non-Smoked / $28.00/5 lbs / Increase
Smoked Pork Chops / $43.00/10 lbs / Increase
Non-Smoked Pork Chops / $40.00/10 lbs / Increase
Bacon / $35.00/ 5 lbs / Increase
Pork Sausage Rounds / $20.00/5 lbs / Increase
Boneless Hams / $24.00/5 lbs / Increase
Pork Cutlets / $26.00/5 lbs / Increase
Beef Jerky / $19.00/1 lb
Pork Souvlaki / $28.00/5 lbs / Increase
Burgers / $55.00/10 lbs / Increase
Burgers / $30.00/5 lbs / Increase
Smokies / $32.00/5 lbs / Increase
Smokies / $58.00/10 lbs / Increase
Rib Eye Steaks / $59.00/5 lbs
ORDERS DUE TO Donna at 545-7813 hm or
Email: by Monday, October 6, 2014
PICK UP: DONNA’S GARAGE AT 290 HODGINS CRESCENT ON
Friday, October 17 at 1:00 pm