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					                                                                                                                                                    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

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
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

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:

                                                                                        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 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 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!

                                                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
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
                                              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      
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!

                                           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:
                                           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
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????