Bleeding Disorders Newsletter
Autumn 2012
Bleeding Disorders Program
& Hemophilia Ontario
South Western Ontario Region
Hemophilia Ontario, SWOR Update
A Message from the Chair
With the beginning of a new school year (with all its activities) and autumn having just officially
arrived, there can be the tendency to „cocoon‟ with our own individual families/friends and
perhaps forget about the needs and opportunities in our larger hemophilia community.
Living with an inherited bleeding disorder, however, never stops; and so our efforts as the
hemophilia / bleeding disorders community need to be on-going. There are many activities /
fundraisers that continue such as the recent Just the Guys Weekend; upcoming Commemorative
Tree Planting; Golf Tournament; Wreath, Pots and Swags, Winter Celebration; November appeal.
Each of these activities needs not only staff support (Regional Service Coordinator - Matthew)
but also strong support by volunteers.
As you look at your calendar, please consider what one or two ways you can give of your time to
be involved in one of the activities listed. When each one of us gives a portion of our time, it
means the work is shared and what we achieve together is greater than what we can achieve
alone. Achieving Together is the theme of our November appeal! The purpose for our efforts is
to see greater health and improved quality of life for all those living with inherited bleeding
disorders!
Achieving together,
Marion Stolte, SWOR Chair
Polar Bear Dip 2012
Members from LaSalle to Woodstock gathered on an April Sunday
afternoon at Little Beach in Port Stanley for our third annual dip to
celebrate World Hemophilia Day and be part of a global action to
raise the awareness of inherited bleeding disorders. Our dippers not
only raised awareness (and a few eyebrows), they raised over
$2200 for programs in the region. Special thanks to our dippers,
their sponsors, our volunteers and of course Mother Nature for just
a little light rain and no snow or ice on Lake Erie! (I was told that
the RSC has not gone in the water during the Polar Bear Dip before
-- who knew -- everyone but me!)
Just the Guys – Pirates Weekend
Pirates were everywhere for the Just the Guys weekend, September 21 – 23 at the YMCA
Outdoor Centre in St. Clements. The event was filled with affected young boys (4-17 years old)
and their fathers or adult role model participating in education sessions, outdoor activities –
swimming, kayaking, campfires, and sharing and participating in pirate fun. The theme ― Pirates
Weekend started with the first challenge event designing a flag and ended with the last
challenge event Sunday morning with the swash bucket. The treasure was found and shared
among the Pirates! Many of the participants are looking forward to another great Just the Guys
next year!
The education sessions included travel with a bleeding disorder, part of the Passport to Well
Being series. A session for the younger boys and their fathers on how factor works was led by
Zach a youth volunteer together with Georgina, Hemophilia Nurse Coordinator from Toronto.
Meanwhile the older boys where learning about transitioning from the children‟s bleeding
disorders program to the adult program led by Dr. Vicky Breakey, hematologist at McMaster
Medical Centre. Special thanks to our nurse Georgina, the staff of the Outdoor Centre, to the
presenters, Dr. Breakey, our youth volunteers and staff.
2012 Commemorative Tree Planting
SWOR continues to build the forest of trees planted in the region to
commemorate the tainted blood
tragedy. This year our ceremony
was held during the Just the Guys
A quote from one of the
weekend at the YMCA Outdoor
presenters:
Centre. Just the Guys has been at
the same location for ten years
“I also wanted to thank
and the ceremony was planned by
you for the opportunity
Ryan Kleefman, Youth Leader for
to be part of such a
the weekend and member of the
special event and play a
SWOR Council.
role in the tree
ceremony. I never
The tainted blood tragedy has
realized how much this
impacted the families and
would mean to me,
communities of South Western
knowing that my father
Ontario in many different ways. The ceremony focused on
in law has Hep C until I
this impact from the perspectives of the grandfather, father,
was put in that position.
son, and future generations. Participants during the
It really hit home as
weekend were invited to play each of these roles and
you
saw and I am
present their unique perspective of the tainted blood
grateful for that. “
tragedy. This was a moving ceremony with the full
participation of everyone attending Just the Guys.
World Congress Update
SWOR selected 3 individuals to represent our region at the World Federation World Congress in
Paris, France from July 8 – 12, 2012. Long -time volunteer Michelle Lepera, her daughter Julia
(Pinecrest Adventures Camp staff) and Holly Valenta (Pinecrest staff and SWOR Council member)
were selected from the applicants to attend. Each were asked to submit a report on what they
learned, excerpts from each report are below.
I attended this year‟s congress in Paris as a
sister of a hemophiliac and as a daughter
who is a carrier. My life has been affected
by Hemophilia since I was two years old but
most of the time it has been in a positive
way. I was ecstatic when I found out I
would be going to World Congress because
I knew I would be learning new things,
along with meeting new people and I could
help make a difference in the
Bleeding
Disorders Community. I learned a lot of
new information from going to congress. I
went with my mother and my grandmother.
We decided to go to different meetings in
order for all of us to get various information
that we could share with each other later.
That way we learned more than if all of us
attended the same sessions.
Paul Wilton presented at a session about
our camp and we learned about camps in
other countries. Comparing our camp to the
one in the United States, I‟m glad we have
our camp because at their camp it is
specifically for the people who have
bleeding disorders. At Pinecrest, it involves
the child with the bleeding disorders
siblings and allows them to be involved.
Pinecrest Adventures Camp is where I put a
lot of my volunteering. I started attending
camp when I was seven years old and this
year is my second year as a counsellor.
After learning about how hemophilia is
treated around the world, I am so glad for
my mom, brother and future family
members that we are Canadian and live in
such a wonderful country. In a few years I,
as an active volunteer in the Hemophilia
Society, want to join the council to become
even more active. I love volunteering for a
cause that benefits my brother and his
health.
Julia Lepera
I attended as a mother first, but as well as a
woman with a bleeding disorder. My
mother
and my daughter attended with me. It was
important for me that my
daughter sees what
hemophilia looks like outside of Canada, because
it is a
very different world than what we are
used to. Julia also volunteer‟s in the society and
as the future of our organization I think it is an
awesome opportunity for our youth! It was
important for me to have my mother with me
because she is my emotional
support. She
constantly reminds me to think of my bleeding
disorder too, not only my sons.
We made an
excellent relay team for Canada!
Attending world congress has made me
extremely proud to live in Canada. Our
opportunities here are endless! In
future
world congresses I believe Canada should speak
to more sessions with a positive
look at
bleeding disorders. We should show the world
our unique programs, the
outreach we do and
how our boys are growing into healthy young
men because of
prophylaxis, and the
treatment they receive in Canada. For example,
a session on our HTC in London for the
southwest region of Ontario and all the benefits
the team provides. If we show this to the world
I hope that other
governments can see our
accomplishments as well as our failures and
learn from them. Then the
world can become
a place where TREATMENT for ALL becomes a
reality.
Michelle Lepera
I had the great honour to have been chosen to
represent SWOR as a Congress participant in
Paris, France for their 50th Anniversary of WFH
2012 Congress. This is the largest meeting of
the global bleeding disorders community and
over 5,000 delegates from over 130 countries
participated. The Congress of The World
Federation of Hemophilia continued their strong
tradition of sharing knowledge and increasing
understanding about inherited bleeding
disorders. The reality is that approximately 75
percent of people with bleeding disorders
around the world still receive very inadequate
treatment or no treatment at all. The 2012
Congress from July 8th – 12th featured the
leading experts from around the world providing
an opportunity to share the latest scientific
research, prevention and treatment strategies.
It is where new ideas relating to bleeding
disorders and treatment were shared. It was a
great way to be together with medical
professionals who provided the newest
developments in the constant changing world of
medicine.
I am currently enrolled in the Nursing program
at Conestoga College in Kitchener. My brother
has Mild Hemophilia A. Being involved in his
care has led me into the natural role of a
volunteer with SWOR. The volunteer experience
is not only about the hours you serve, but also
the excitement and fun of experiencing the
interaction with others. I have been a
counsellor at Camp Pinecrest for the past 4
years. Upon graduation, I would like to
continue my nursing career in Hemophilia and
other related Bleeding disorders. I plan to stay
connected by volunteering in the region and
sharing my knowledge and experiences with
others.
In conclusion, I believe this whole experience is
about “Empowerment”! Empowerment is a
process that challenges our assumptions about
the way things are and what can be. The
seminars at WHF challenged our basic
assumptions about life, helping, achieving, and
succeeding. Empowerment is a process that is
similar to a path or journey, one that develops
as we work through it. 2012 WFH Congress
focused on the strengths of people, providing
opportunities and resources for people to gain
experiences and skills. I have been given the
rare privilege to experience this “one in a
lifetime” opportunity.
Holly Valenta
Summer Celebration
Hilary and Steve Kustermans hosted our
summer celebration and barbecue this year.
What a great event as we had children,
parents and grandparents participating from
the whole region Windsor to Goderich to
Woodstock to St. Thomas. Of all the
activities and food the favourite was
definitely the sand pile!
We hope you will have a chance to visit the
Kustermans‟ Berry Farm http://berryblue.org
during their fall festival. Thanks to Kathleen
for her help organizing and during the event,
Marco our burger and hot dog grill master,
everyone that joined us, and especially the
Kustermans for their hospitality.
A Story Shared After Camp
Paul told us the following story. They were on
their way back from the pool and Paul asked
one of the boys under his supervision to take
off his life vest. The boy said he didn’t want
to. When Paul asked him why, he was told it
was because he didn’t want anyone to see his
‘port’. Paul lifted off his own shirt and showed
him the scar from where his port used to be.
He called over one of the other leaders and
asked him to see his port scar which the other
leader was happy to show. A third leader
heard this and took off his shirt and pointed
out his scar. The little boy smiled and took off
his vest, no longer embarrassed.
Pinecrest Camp Celebrates 20 years!
On the weekend of June 8-10 the Pinecrest camp staff was engaged in a pre-camp training
weekend. The idea of this weekend was to train and build a team atmosphere in anticipation of
camp. Many of the counselors attended NACCHO this year, or in the past, and it showed. A lot of
what happened at the training weekend was ideas and information that was derived from
experiences at NACCHO.
There were a number of ideas that travelled from NACCHO to our Pinecrest training weekend.
These could range from new songs being taught, new games being played, and even new
procedures that we could implement. Fresh ideas on staff training were also put to use where
staff had to care for eggs as though they were campers. We also brought back the idea of
inviting guests to help train our staff.
At the training weekend we had guest speakers come in and educate the staff on some great
topics. We had presentations on our own and other peoples‟ personalities, leadership, customer
service, and on bleeding disorders. The amount of knowledge the team gained from the variety
of different presentations is awesome. This led to many different discussions on how these
presentations had ideas/traits/scenarios that are directly applicable to camp. Through our
discussions we also came up with a goal as a staff we are going to employee this year at camp.
The Pinecrest staff‟s goal this year is to be “All In”. From the presentations we decided that “All
In” fit what we were going for best as it is a quick little saying that can be applied to many
different scenarios. Most importantly, “All in” means we are going to give every last ounce of
energy at camp because we know that the campers, parents, and our fellow counselors deserve
our best performance.
With the ideas brought back from NACCHO, and with the help of our guest speakers, the
weekend was a big success. I want to extend a big thank you to Kevin Cruse, Jaclyn McKenna,
our nurses Lori and Keira, and Terri-Lee for helping make this weekend of learning a possibility.
Nick Higgins, Director Pinecrest 2012
When Liz Clegg and John Meyers imagined Pinecrest and then initiated its first year in Liz‟s
cottage backyard in 1992 with nine campers and a few volunteers, I‟m not sure that they could
ever have imagined it as the outstanding SWOR cornerstone program it is today. Sunday
August 26th, community members, past campers and staff, donors and sponsors joined the 2012
campers and staff as we celebrated twenty years of camp.
Dick Wijnker, father of an affected son and whose children grew from camper to amazing camp
volunteers, was a member of the original camp committee along with Pam and Brock Wilton and
Matthew Maynard. Dick talked about how and why Pinecrest exists today and why he and his
family strongly support this program.
Carol and Lynn Meyers and their daughter Leslie, John‟s sister, shared with us the important role
of camp in John‟s life and why he was so passionate about bringing Pinecrest to life:
“John loved going to camps and living in Goderich he was fortunate enough to go to our
Salvation Army camp in Bayfield from the age of eight, because we were so close to this camp
living in Goderich. I know he thought it would be so wonderful if young boys with hemophilia
could have a camp to go to as well. John felt that a lot of other kids with handicaps, physical
and mental, had camps to go to and so should boys with hemophilia. John also experienced a
canoeing camp with the hemophilia program in his early teens but that was a long distance away
from the London area and Goderich. I think John and Liz Clegg got the idea to use Liz’s cottage
and yard near Grand Bend for their very first camp. There were 9 or 10 kids who camped in
tents on Liz’s property on Lake Huron near Grand Bent that year. That was the birth of the first
camp for bleeding disorder kids.”
Advance Practice Nurse Lori Laudenbach has participated as the Pinecrest camp nurse for over
fifteen years. Families, campers and staff agree that Lori‟s presence adds a key component for
families to have comfort leaving their campers with us for the week.
Paul Wilton has participated as a camper and staff and has been at camp each of the twenty
years it has existed. Paul shared key memories:
“Our first camps were small and informal but they set a standard of care and community that
endures today. Over the years our camp has grown, become more inclusive, developed our
educational program and adapted to new challenges. Amazingly, each year camp is better than
the year before. The staff who have previously participated as campers believe it is important to
give back to a community that has given us so much. We recognize that for many of our camp
leaders it was a struggle to be at camp because of pain, limited mobility and tainted blood. We
realize people gave a lot of themselves to make our lives better and we hope we can do the
same for the next generation.”
We recognized current and past sponsors and donors including all those individuals who donate
to the SWOR region throughout the year and through the November Appeal mailing campaign.
Without their support Pinecrest would not be a reality. Thank you again to the following
company sponsors: Baxter, Bayer, Cando Contracting, CSL Behring, Laureate Nu Sorority,
London Community Foundation, Manulife Financial, McCormick Employee Fund, Novo Nordisk,
Pfizer and RIM.
Following the ceremony, campers and parents went through the „time machine‟ to look at camp
photos, see a great display of camp T-shirt and decorate a square for our memorial quilt.
Thanks to Denise Wijnker for your commitment to making this happen.
Before leaving, everyone enjoyed a BBQ lunch followed by delicious cake, made and donated by
Lindsay Hazelwood, thank you Lindsay!
Pinecrest is a five day residential camp for children with a bleeding disorder aged 5 – 16 and
their siblings. It is designed to meet the special medical needs of these children and provide
respite to parents while providing campers the opportunity to experience camp as all children do
and provides hands-on learning opportunities to help grow self-esteem. Here‟s to another
twenty amazing camp years.
Liz Clegg and John Meyers Award
Terri Lee Higgins
Annually there are two awards handed out at camp -- The Liz Clegg Award for friendship to
campers and The John Meyers Award for outstanding commitment and dedication to camp. This
year we are pleased to recognize Zach Adams (at left below) as the Liz Clegg Award recipient
and Ryan Kleefman (at right below) as the John Meyers Award recipient. Both these individuals
were outstanding in their roles as counsellors. Congratulations to both of you for a job well
done.
This year at Pinecrest we celebrated the 20th year of camp with the
theme of “Blast from the Past”. This theme had campers travelling
back through time and having to work to get back to the future so
that we could all go home on Sunday. The theme was well planned out
and executed by the staff allowing us to do new things but also
honour the past themes the camp has used.
Some highlights of camp were:
The Saturday night theme
Dinner where each cabin dressed up as a past theme
The LIT led camp fire
The talent show
The new things we tried such as a Dance class, Creative writing, and
the “noitacude” photo scavenger hunt
The team names (Time Travel Warriors vs. Zeus Spies) and the
amazing chants (one team even chanted the alphabet to prove they
were louder than the other team)
The pool was a very inviting with the warm end of summer days.
And of course who could forget those epic games of Jugs!
It‟s hard to imagine but somehow Pinecrest manages to get better
every year. A big part of that is our volunteer staff‟s preparation and
dedication. The staff not only gave up their time that week, but put countless hours in before
camp. Whether it was building a „time machine‟, picking out crafts, or making lists of camp
songs, everyone was super prepared for camp
making everything run very smoothly. A big
thank you is owed to all the staff.
In closing I want to add a few more thank
yous. I want to thank the medical staff for
making sure they continue to come to camp
ensuring that the camp will happen. Lastly I
want to thank to campers. The campers are a
ton of fun and the main reason that I cannot
stop coming back to Pinecrest. It is great
watching them grow up and I hope they all
continue to come to camp and consider
becoming staff when they are of age.
Nick Higgins, Camp Director 2012
LIT Program
The LIT program is beneficial because it increases leadership skills, teaches you how to work
with others, from staff to the children and it also prepares you to become an efficient staff
member. Being put in a cabin with campers in your second year is great experience because
it prepares you for the difficulties that come with being a responsible staff as well as allowing
you to create a bond with different people. The skills you develop as a LIT are useful in a
camp setting as well as other situations like a school and work environment.
Johnny Lepera
Quotes from Camp
Some things that we all enjoyed were swimming, crafts and
the themed mealtimes. We enjoyed being able to play while
being safe and having fun with our friends from the year
before. I enjoyed creative writing and I’m pretty sure
everybody else did too. This was our second year and it was
as fun as the first! -- Nancy & John Berg
Some things that I enjoyed about camp were swimming with
some new and old friends. I also really enjoyed doing archery and many different things in crafts.
Another thing I enjoyed was the costume night and the camp fires. During one of the camp fires, I
enjoyed it when Johnny and Paul put on the act, it was really funny and I think everyone enjoyed it! -Franz Berg
Barry Haarde
Matthew Maynard
met up with Barry
Haarde in London
while Barry was
biking across America
for Save One Life!
Barry‟s ride started in
Oregon and finished
in New Hampshire,
USA. The route took
him to London from Port Huron, Michigan on
Friday. Barry continued his ride to Brantford
then Niagara Falls, New York. Barry is the first
person with hemophilia, HIV and hepatitis C to
ride across North America on a bicycle.
Barry Haarde has severe hemophilia A and is a
30+ year survivor of HIV and hepatitis C,
contracted through blood products. Barry
through training, prophylactic treatment and a
lot of support raised awareness and funds for
hemophilia through his ride across America.
You can go to Barry‟s Facebook page to see the
results of this remarkable achievement.
Stories published locally about his stop in
London, Ontario London Community News and
The Londoner
On-Edge Fitness Stair Climb
Chris and Stephen Norton sponsored,
organized and got support from climbers
and donors for the On-Edge Fitness Stair
Climb June 17th. In Sarnia Ontario
they found the tallest building calculated
that 9 trips up the stairs was equivalent
to climbing the CN Tower. It was a
great event always fun and this year
raised over $3000 for programs in South
Western Ontario and Sarnia.
Special thanks to Chris and Stephen and
their family and friends and a shout out
for the support of Norton Hairstyling and
On-Edge Fitness!
5th Annual Golf Tournament
The big day! September 28th Matthew, Terri-Lee and I all met at Bear Creek. Matthew‟s Honda
Element and my Dodge Caravan nearly bursting at the seams with everything required to make
the day a success. Our day started several hours before that in preparation. Lynda, Chris, Judy,
Rosemary, Kathleen, and Ryan arrived and helped set up. This was a much needed boost as
golfers started arriving to register. From my view I watched as our dedicated volunteers Ryan,
Lynda, Kathleen and Rosemary, and Terri-Lee went from set up to full blown registration of
golfers in blink of an eye. Truly astounding! To be quite honest the entire morning for me was a
complete blur and I can‟t give you the exact details of what transpired running around getting
questions answered or generally making sure the golfers knew how much their presence was
appreciated and dealing with any other administrative duties that required attention. By 1230hrs
I was attempting to switch in to participant mode which was extremely difficult let me tell you!
We had a shotgun start for the first time in five years and from there the day went extremely
well. I was so pleased to see a sponsor at all 18 holes which has never been done in our
tournament‟s five year existence! This is speaks volumes to the diligent work of Fred, Lynda,
Chris, Charlie and Matthew. It was a gorgeous day 18oC with at times a brisk breeze. A perfect
fall day for a round of golf!
Post Golf was smooth as Terri-Lee prepared to be our emcee after charging the golfers like
Robocop on steroids as our police patrol. I could tell the entire room was getting a bit hungry as
we all waited for a few stragglers to come in after their round. As always Terri-Lee ensured the
evening proceeded along so that everyone could start heading home. The day was busy, at
times stressful, but once the golfing started it ended up being a fantastic day.
Travis Hazelwood
Thanks to our volunteers, committee, sponsors and golfers for making this a great event!
Platinum Sponsors
Bronze Sponsor
Cart Sponsors
Pfizer Canada and Source for Sports, London
HN Roofing and Sheet Metal Ltd
Van Boxmeer Construction and the London Police Association
Contest and Hole Sponsors
All-Round Truck and Auto Care
Allan Van Massenhoven
Canadian Institute of Management
CANDO Contracting
Creston House
Gary Hudson's Priority Rental
Hazelwood Family
LPFFA
Martin Jesps Custom Cabinetry
May-McConville
Maynard Family
Rocky's Harley Davidson
Ross Family
Eric & Marion Stolte
The Navigators
Walmsley Brothers Limited
Auction and Prize Donors
Heeman Greenhouses & Strawberry
Farms
VIA Rail Canada
Ann McMillan
Black Fly Beverage Co
Cando Contracting
CIBC
Bob Martin's
Rocky's Harley Davidson
London Pro Baseball
Fox Golf Club
Christine Ross
Charlie Panghorn
Pet Valu
London Firefighters Hockey Club
Starbucks
City Slicker's Country Cafe
Higgins Family
Lynda Morton
Epicure
Country Paws
Wright Hair & Co
Hazelwood Family
Fine Details
Lara Martens
The Hilton London Ontario
London Fire Department
Spectrum Photography
Manulife Financial LPGA Classic Rona
East Park Golf Gardens
Red Moose Catering Co
Catton Family
Nothers
Hockley Beverages
Men’s Longest Drive
Women’s Longest Drive
Rocky Harley Davidson Hole in One
Closest to the Pin
$10,000 May-McConville Hole in One
Closet to the Pin
50 /50 Closest to the Pin
Trivia Contest
Fun Ball
Closest to the Bucket of Booze
Most Honest
Winner Best Score
The Tournament Winners
Jeff Robinson
Lindsay Schmidt
No hole in one
Jim Higgins
No hole in one
Brad Clothier
Mark Roberts
John Lepera‟s foursome and Eric Stolte‟s foursome
Robert Turnbull‟s foursome
Lisa Campbell
Chris Ross, Ann McMillan, David Mussar
Robert Turnbull, George Demopoulos, Robert
Fowler and Fraser Smith
Do you want to stay connected your way?
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Relatedbyblood.org
is Hemophilia Ontario's new online support forum. It's a private and
confidential online network where you can exchange advice and support with the bleeding
disorders community.
Whether you're newly diagnosed and looking for support, need some advice on raising a child
with a bleeding disorder, or want to chat with others living with HIV or hepatitis C, this is the
space for you.
Go to www.relatedbyblood.org to check it out.
Upcoming events:
November Appeal with be going out in late October featuring families and volunteers from
across the region
Winter Celebration plans are being made, stay tuned for details
Hemophilia Awareness Month – have a group or event to showcase SWOR? Call Matthew
at 519-432-2365 or email mmaynard@hemophilia.on.ca
Pots, Wreaths and Swags: Orders will be taken in November throughout the region. For
delivery or pick up on November 30th and the first week of December. If you want to
place an order OR help out contact Matthew or Maureen (Maureen.Schaus@lhsc.on.ca)
We all have loose change in our pockets and purses.
Not sure what to do with the pennies and coins in the jar at home?
A PENNY FOR YOUR THOUGHTS
This is your chance to let your change make change in the lives of
children, youth and adults living with the pain of inherited bleeding
disorders. Just drop off at one of the locations in your region and
we will do the rest!
Please consider supporting Hemophilia Ontario to help us make a
“change” today.
1 in 100 Canadians carries an inherited bleeding disorder gene
1 in 10 of these, or 35,000 Canadians, have symptoms severe enough to require medical
care
Help STOP THE BLEEDING
http://www.stopthebleeing.ca
http://www.hemophilia.ca/en/provincial-chapters/ontario/south-western-region/