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Hemophilia Saskatchewan
2366 Avenue C North, Saskatoon, SK S7L 5X5
Tel: 1-866-953-4366 or 653-4366 Email: [email protected]
November 2012 Fall Newsletter
We had a blast this summer!
What happened at the Hemophilia
Family Fun Weekend, page 4
More about the 2012
Grey Cup Raffle, page 8
Update from the World Congress
for Hemophilia in Paris, page 10
See you at the
Hemophilia
Saskatchewan Family
Xmas Party
DECEMBER 8, 2012
Saskatoon
President’s Message ……………………… p. 2
Board of Directors …….………………….. p. 2
HSK Xmas Party ……………………...….. p. 3
Hemophilia Family Fun Day ……………… p. 4
Mother Daughter Weekend …….…………. p. 7
Bleeding Disorders Month ………………... p. 7
2012 Grey Cup Raffle Info ………………... p. 8
2012 Queen City Marathon ……………….. p. 9
World Congress in Paris Update ………….. p. 10
Travis Duncan Foundation ……………….. p. 12
Influenza Vaccine ………………………… p. 12
In Memoriam …………………………….... p. 13
Children’s Wish Foundation ……………… p. 14
Louise Paisley Mem Bursary .……………. p. 15
Upcoming Events .…… ………………….. p. 16
Contribution Deadline Date ………………. p. 16
Membership Form …………………..……. Insert
HSK Donation Form ……………………… Insert
November is
Bleeding
Disorders
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Board of Directors
President: Maia Meier
Vice President: Wendy Quinn
Treasurer: Derek Bissonnette
Secretary: Elaine Zech
Past President: Anne Lukian
: Ann Wood
Director: Kim Cullen
Director: Celena Moody
Director: Ann Wood
Director: Glenn Wood
Director: Sandra Dionne
Thanks for the Help!
Thanks to Bayer Inc. for the
grant supporting this newsletter.
President’s Message
Fall is upon us and I can’t believe how quickly the summer has come and gone. Things have been busy with Hemophilia Saskatchewan the past couple of months. We participated in the Queen City Marathon in Regina for the 2nd time and it was a huge success! Thank you to all the volunteers who helped make this day a great one for all the runners and brought awareness to our organization. Our Family Weekend event was held the following weekend in Moose Jaw. This again was a fantastic event, that brought families together and got everyone participating and socializing together. I was disappointed that I wasn’t able to attend, but happy to hear that it was enjoyed by everyone who attended. Thank you to all our volunteers that helped make this event such a great success and to our speakers and presenters for providing us with new information and knowledge. November is Bleeding Disorders Month and we will be having booths again at Canadian Blood Services in Regina, Saskatoon, and Prince Albert to help raise awareness about inherited bleeding disorders. If anyone is interested in volunteering their time to sit a booth in one of those cities, please contact us and let us know. We are also starting a CFL Grey Cup raffle fundraiser this month. We will be selling tickets for the 2012 Grey Cup game, 25% of the funds raised will go towards the CHS Million Dollar Club which funds research for inherited bleeding disorders. Be sure to contact us to purchase your tickets, or if you are interested in selling tickets. December will bring our Family Christmas Party! Be sure to come out and celebrate the Holiday Season with us! Until then, I wish you all and your families a safe, healthy, and happy autumn season! Maia Meier President, Hemophilia Saskatchewan
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Family Xmas Party
December 8, 2012 1:00 - 4:00 pm Swimming
4:30 pm Light Supper
5:00 pm Gift Opening
Radisson Hotel
Shakespeare Room 3rd Floor
405-20th St East
Saskatoon, SK
Please let us know by November 29 if you will be attending.
Leave a message at 1-866-953-4366 or email [email protected]
or contact Celena 306-237-4261, [email protected]
We need to know ages of all children, proper spelling of their names, gender and number of family members attending.
Remember to bring swimsuits and towels.
Parents to supervise their children at all times.
Sponsored by
Hemophilia Saskatchewan
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Physical Activity can be FUN!!!
Hemophilia Family Week-end,
Moose Jaw, Saskatchewan,
September 14-16, 2012
Roona,
Michelle
and
JoAnn
The Saskatchewan Bleeding Disorders Program team offered education around the health benefits of physical
activity at the Hemophilia Saskatchewan family week-end. This was presented by Michelle Sims SW and JoAnn
Nilson PT. The importance of physical activity was emphasized for reducing the number of joint bleeds, better
flexibility, increased strength, improved co-ordination, reduced risk of cardiac problems, reduced complications
with diabetes, weight loss, stronger bones, better sleep, reduced stress, fewer falls, and remaining independent
Adult Aquasize Instructed by
April Rubbelke
From Moose Jaw
Children’s Aquasize
Instructed by April
Rubbelke
From Moose Jaw
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Instruction was also given on how to prepare for a new activity and knowing when to seek advice of your
health care team.
“Drum’s Alive”
Instructed by
Jacqui Dumont,
from Regina
A variety of types of physical activity were offered and everyone was able to select 3 different 40 minute
classes. Local fitness instructors were selected to offer these classes. The classes included Zumba, Yoga,
Drums Alive, Strength with Resistance, Urban Poling (Nordic walking poles) and Aquasize.
Urban poling
Instructed by
David and Sheila
Taylor
16 families with a total of more than 50 people attended this event. The evaluations indicated that there was
an overwhelming positive response to trying new physical activities and that some will seek out similar
classes in their local communities.
Note the concentration, captivation and smiles in the photos!! We as a Health Care team are
appreciative of the opportunity to be included in such a fun family event.
Report submitted by JoAnn Nilson, Physical Therapist on behalf of the Saskatchewan Bleeding Disorders
Program. Program: Dr. Roona Sinha, Dr. Robert Card and Dr. Kelsey Brose Hematologists, Nancy Hodgson
and Colleen Buehler and Tara Schlosser, RN’s, Rick Stene, Manager, and Michelle Sims, SW.
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Strength Training with resistance
Instructed by Justine Deets, Moose
Zumba and Yoga
Instructed by Faye Katzman
From Saskatoon
This program was sponsored with an
unrestricted educational grant from
Baxter. We wish to Thank Jennifer
Hallows for all her support.
Hemophilia Saskatchewan would like to thank the following for their sponsorship of the Family Weekend
Saskatoon Community Foundation
for the Quality of Life Grant
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November is Bleeding Disorders Month In recognition of Bleeding Disorders Month, Hemophilia Saskatchewan will have
information tables at the Canadian Blood Services donor clinics, for one day in
November, in each of Regina, Saskatoon and Prince Albert. Our presence at the
donor clinics gives us an opportunity to thank people for donating blood and
letting them know how much their generosity is appreciated.
Educational material will be available on the display table and members of HSK
will be there to interact with the public.
If you are interested in volunteering at the donor clinic,
please phone and leave a message at1-866-953-4366 or
653-4366, or email: [email protected].
Mother – Daughter Weekend
Hemophilia Saskatchewan is planning a Mother – Daughter Weekend to be held in
the spring of 2013. The weekend will provide a time for mothers and daughters,
of all ages, to learn how to improve their quality of life while coping with a
bleeding disorder, a chance to be pampered and time for fun.
Since girls and women are affected by bleeding
disorders in different ways than boys and men, HSK
feels that this weekend will be very beneficial.
Watch for details of this exciting event in the next
newsletter! Better yet, email
put your name on the list to receive information
about this great event!
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2012 QUEEN CITY MARATHON
The Queen City Marathon was held on Sept. 9 , once again our work at the aid station was a success.
We had about 15 volunteers handing out water, Gatorade,
sports gel to all the marathon participants in need.
Thanks to Derek, he rounded up most of the volunteers .Our aid station was on the last leg of the marathon, it was quite
busy and exciting to help encourage the runners on the way to the finish. There was a water truck at our station to cool off
participants with a refreshing spray of water, as it turned out
to be a very warm day, perfect weather.
Thank you to all our volunteers, this is one of the great ways
we are able to represent Hemophilia Sask. We also earned a $500.00 honorarium for our organization. All participants and
volunteers for the QCM are treated to an appreciation pasta
dinner night which is a good time all around.
This is a fun and rewarding experience, if anyone is interested
in helping out next year we would love to have you join.
Submitted by Kim Cullen
2012 Grey Cup Pool
Please join us in raising funds for
Hemophilia Saskatchewan
with this fun and exciting raffle!
25% of all funds raised will be donated to the
Canadian Hemophilia Society’s
Million Dollar Club
which funds research for inherited bleeding disorders.
To purchase tickets or
to participate in selling tickets for
this event please contact
Derek Bissonnette @ 306-526-6185 or
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World Congress 2012 - Paris, France
Submitted by Maia Meier President, Hemophilia Saskatchewan
In July I had the amazing opportunity to attend the World Federation of Hemophilia 2012 Congress
in Paris, France. This was my second world congress and again I was extremely excited to be able to
participate in this event that was attended by more than 5400 people from around the world. The
amount of gratitude and warmth that the Canadian Hemophilia Society receives from around the
world never ceases to amaze me. I felt very proud to be from Canada and part of the CHS and
Hemophilia Saskatchewan. We continue to be some of the leaders in the area of bleeding disorders
with our research, healthcare, and educational resources available to those members of our
communities that are affected by an inherited bleeding disorder.
The five days of sessions held valuable information and many speakers to listen and learn from.
There were several different sessions relating to women at this
congress which included everything from Von Willebrand
disease information, specifics on Women and Bleeding
Disorders discussing carriers of hemophilia and reproductive
concerns and issues, to Women’s Voices and hearing
perspectives from patient, physician and psychologist. There
were sessions related to family including important discussions
on transitioning from teen years to adult. There was focus on
youth programming and keeping youth involved. The pediatric
issues were also focused on and the differences between care in
developed and developing countries were emphasized here.
Along with all this, there were discussions on the Parents
Empowering Parents program, ageing was also incorporated,
musculoskeletal and dental issues were addressed and e-
communication was a new topic presented. One of the most
exciting discussions was related to long-acting products verses gene therapy in the future of bleeding
disorder care.
Paris was an excellent location for this 2012 World Congress and the Association francaise des
hemophiles along with the WFH put on a wonderful event that I will be sure to remember for many
years to come.
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World Congress 2012 - Paris, France
Submitted by Wendy Quinn Vice President Hemophilia Saskatchewan
This year I had the privilege of representing Hemophilia Saskatchewan at the World Congress in
Paris, France. This was my first time at the World Congress and for the most part I sat in awe of all
the world representation, and felt incredible honor to be amongst those that will lead our next phase
of bleeding disorder care. There is a certain mindset that comes when you step away from your own
community in your own side of the world, and you are exposed to how others in our world face the
challenges of bleeding disorders. There is a broad spectrum of the availability of treatment and care
throughout the world, and understandably the developed countries are leagues ahead of the
impoverished nations. Canada is one of the leaders in bleeding disorders care in the world, and if I
didn’t know that fact going in, I certainly felt it while I was there and after. We are incredibly
fortunate to be where we are when it comes to bleeding disorders.
I attended many sessions that included medical/treatment
perspectives, psychosocial issues, family and social issues, sexual
health and social media; such a broad spectrum. My one take away
message came on the last day where there was a panel of experts
debating the gene therapy vs long acting product. The panel included
2 trial patient subjects – one who trialed gene therapy, and one who
was one of the first to trial a recombinant product when it first came
out (George). I sat in that large auditorium and as the session
finished and people were slowly exiting, these 2 men lingered on the
stage and it occurred to me that these men are true heroes in our
bleeding disorder treatment movement. Without the human trials of
any product we can’t go forward. George has made it possible for
my son to never have to wonder about blood borne pathogens in his
treatment. What a freedom!!
The World Congress in Paris was a spectacular experience for me
and has broadened my understanding of what the future holds for
bleeding disorder care.
Pictures on both pages from the 2012 HSK Family Fun Weekend in Moose Jaw, SK
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Seasonal Influenza Vaccine
A few reminders for those Persons with Bleeding Disorders
It’s that time of year again to decide if the Seasonal Influenza Vaccine is for you. The following
is for your consideration in regards to the Seasonal Influenza Vaccine.
Influenza is a contagious viral disease of the respiratory system. It is spread by coughing, sneezing, or direct contact.
Generally influenza may result in you being at home sick for a few days. However it can also result in hospitalization
and even death especially in very young children, the elderly, and those with serious underlying health conditions.
For the 2011 -2012 season the Saskatchewan Ministry of Health has made it possible that every Saskatchewan resident
is eligible to receive the Seasonal Influenza vaccine free of charge.
There are special precautions to be aware of for those with bleeding disorders. Individuals with a bleeding disorder are
at risk for developing a hematoma with the intramuscularly injection of the Seasonal Influenza Vaccine. To lessen the
risk of developing a hematoma it is recommended that.
For those who are receiving regular prophylactic doses of factor concentrates, it is suggested that the
vaccination should be scheduled shortly after a factor treatment when ever possible.
For all individuals with a bleeding disorder a 23-gauge or finer needle should be used for the vaccination.
Following the injection, firm pressure should be applied to the site for at least 5 minutes.
The site should not be rubbed or massaged.
If these instructions are followed, a muscle bleed at the site of injection is very uncommon. However, if you notice
swelling at the injection site, you should have it checked by the Hematologist or Nurse Coordinator from your
Saskatchewan Bleeding Disorders Team.
Antibody protection usually begins within 2 weeks after the immunization in the majority of healthy individuals and can
prevent illness in about 70% of these healthy people. (Information obtained from the Saskatchewan Ministry of Health
2011-2012 Seasonal Influenza Vaccine Fact Sheet and All about Hemophilia: A Guide for Families)
Tavis Duncan Foundation Through the Tavis Duncan Foundation, Hemophilia Saskatchewan is able to offer help for parents seeking to defray a
percentage of the costs associated with the maintenance and treatment of children with hemophilia.
Application for coverage is to be made in advance, if possible. Applicants must be registered members of Hemophilia
Saskatchewan.
The Foundation will reimburse for items and/or expenses such as:
the purchase of safety apparel ( ie. head gear, elbow pads)
$50.00 per year per affected child, under the age of 18 years, towards the purchase of adequate footwear
assistance with in-hospital costs during an extended visit
assistance with out of province medical costs
summer camps
an educational opportunity for a family member to increase their knowledge of
hemophilia
For application forms, please contact the Hemophilia Saskatchewan office by mail, phone or
email.
Hemophilia Saskatchewan
2366 Avenue C North,
Saskatoon, SK S7L 5X5 Phone:1-866-953-4366 or 653-4366
Email: The Duncans at [email protected] or [email protected]
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In Memoriam
Ed Zerr August 14, 1930 - October 7, 2012 Ed Zerr, an active member of the community, was one of Hemophilia Saskatchewan’s first
presidents. He worked hard to improve the quality of life for those with hemophilia. Every
Sunday Ed would pick up Regina families affected by hemophilia and take them to the
University of Regina swimming pool,
where it had been arranged for the
youngsters to swim for free. While the
youngsters swam, the parents would
visit.
A quiet, unassuming man, Ed was
devoted to his family. He and his wife,
Emma raised three children and two
grandchildren.
His giving nature led him to a life of
community service. In his spare time
he’d enjoy music, especially his
accordion.
Ed was predeceased by his wife Emma,
son Garth, daughter-in-law Susan and
son-in-law Dennis Zech. He leaves
behind his daughter Elaine; son Philip
(Gail); seven grandchildren and five
great-grandchildren.
Saskatchewan’s Help Lines
For bleeding problems contact the Saskatchewan Bleeding Disorders Program by phoning our nurses, Colleen and
Nancy at 306-655-6424.
The Saskatchewan Health Line, 1-877-800-0002, gives you access to a nurse to help you decide, based on your symp-
toms, if there is a need to see your doctor or a if a visit to the Emergency Room is warranted.
Saskatchewan Consumer Drug Information Service can give you advice on over the counter and prescription drugs
as well as herbal remedies. Phone 1-800-665-3784, or in Saskatoon 966-6378
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Children’s Wish
Children between the ages of 3 and 17, who have
moderate to severe Hemophilia (or other severe bleeding
disorders) are eligible to apply for consideration of a
wish from the Children’s Wish Foundation!
Wishes tend to fall under 3 categories- travel, an item, or
a celebrity contact (which often involves travel).
Examples have been trips to Disneyworld, home
entertainment centers or computers, specific home
renovation/decoration projects, contact with a sports or
entertainment figure. The idea is that it be something
meaningful and special for the child.
They have a One Child, One Wish policy, and will not grant a wish to a child who has
previously received a wish from another wish granting agency. A child who has received a
wish grant in the past, can apply for a subsequent wish in the event of a new high-risk life
threatening illness.
The process to apply is as follows:
Contact
Gina Graham
The Children’s Wish Foundation
Phone: 306-955-0511
Fax: 306-653-9474
Email: [email protected]
You will need to sign consents for release of information. Your child’s doctor or haematologist
will be contacted to verify the medical condition. Gina would then assist you in submitting the
wish request, which is then referred to their national office for a decision. If the wish is
granted, Gina would assist you in planning how to fulfill the wish.
Don’t hesitate to contact me if you have questions, or if I can be of any help!
Michelle Sims, R.S.W. ( SK)
Social Worker, Sask. Bleeding Disorders Program
What’s new? If you would like to receive an electronic copy of our newsletter instead of a print copy
please email [email protected] with your name and email information.
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Louise Paisley Memorial Bursary Application $500.00 to be awarded to student with a bleeding disorder or family of a person with bleeding disorder enrolled in a post secondary
education program.
Eligibility Criteria
Student enrolled in a post secondary education program
Student could be:
Diagnosed with a bleeding disorder
Family of a person diagnosed with a bleeding disorder
Family is defined as siblings, parents or grandparents of a person diagnosed with a bleeding disorder
Student must be a member of Hemophilia Saskatchewan
Bursary Application must include:
Current resume
Transcript of high school marks if applicable
Acceptance letter to post secondary institute
2 letters of reference
Personal Information:
Surname:____________________________First Name:_________________________
Permanent Address:______________________________________________________
Email: _____________________Telephone:__________________Cell:_____________
Bleeding disorder diagnosed: ______________________________________________
Name of Family Member with diagnosed bleeding disorder: ________________
Check one: _______Sibling _________Parent ________Grandparent
Bleeding disorder diagnosed: ________________________________________
Education Information:
Name of Program:_________________________________________________________
Length of Program:________________________________________________________
Year of Study: _____________________Date Program Complete: _______________
Bursary will be reviewed annually in and this year the application deadline is November 30, 2012. Successful applicants will be
notified within 4 weeks of review.
Declaration:
I certify that all the above statements made by me are true. If it is found that I have given false information in this application, such
falsification will constitute full and sufficient grounds for rejection of this application.
Student’s Signature: ________________________ Date:__________________________
Please submit application and supportive documentation to:
Hemophilia Saskatchewan
2366 Ave. C North
Saskatoon, Saskatchewan
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The next newsletter deadline is
January 20, 2012. Your
contributions are always
welcome. You may email
Or send them to the office, 2366
Avenue C North, Saskatoon, SK
S7L 5X5.
Please Note: Opinions expressed herein are those of the authors, and do not necessarily represent the views of Hemophilia
Saskatchewan. We do not guarantee the accuracy of information contained herein, and accept no legal responsibility for information
quoted from other sources.
Hemophilia Saskatchewan acknowledges Baxter, Bayer, Nova Nordisk, CSL Behring,
Sasktel Telcare and Sasktel for the support given to our programs.
This newsletter has been generously sponsored by a grant from Bayer Pharmaceuticals.
Upcoming Events for 2012—2013
Deadline for Louise Paisley Memorial Bursary November 30
Family Christmas Party December 8
Deadline for Winter HSK Newsletter January 20
North and South Education and Social Days February TBA
Hemophilia Saskatchewan Annual General Meeting March 9
Deadline for CHS Scholarship/Bursary April 30
Mother Daughter Weekend Spring TBA
Just a friendly reminder!
Just a friendly reminder to contact the Saskatchewan Bleeding Disorders
Program (SBDP) at least 2- 4 weeks PRIOR to any scheduled surgeries,
medical or dental procedures that may cause bleeding. This would ensure
we had adequate time to make the required arrangements to control
possible bleeding that may occur, as well as to educate the health care
personnel that may be involved with your care/treatment. If enough
notice isn’t received your scheduled surgery, medical or dental procedure
could be postponed or even canceled.
The Nurse Coordinators with the Saskatchewan Bleeding Disorders Program (SBDP).
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Hemophilia Saskatchewan Donation Form $200 Club
The objective is to provide HSK with stable, reliable, and ongoing funding that would help us to
plan our activities and reduce reliance on outside sources of funds.
Our goal is to find 100 families, groups or individuals who will pledge a minimum of $200 per
year on an ongoing basis.
A commitment to the $200 Club is made on the understanding that if the contributor’s financial
situation changes, the yearly commitment could be discontinued at anytime.
Please note, this donation can be paid in installments through monthly giving.
_____ Yes! I would like to join Hemophilia Saskatchewan’s $200 Club
_____ I prefer to make a one time donation of $200
_____ I prefer to make a monthly donation in the amount of $_____ and authorize Hemophilia
Saskatchewan to charge the indicated amount on my credit card
Monthly Giving Program
Your monthly gift helps Hemophilia Saskatchewan meet its commitments to people affected by
bleeding disorders by providing a steady stream of income.
_____ I want to make a monthly donation of $_____
_____ I have enclosed 12 post dated cheques for the amount indicated
_____ I prefer to make my monthly donation by credit card and I authorize Hemophilia
Saskatchewan to charge the indicated amount on my credit card
Please Note: You may cancel or change your monthly donation at any time by notifying us.
One Time Donation
_____ Yes! I would like to support Hemophilia Saskatchewan with a donation in the amount
of:
_____ $250 _____ $100 _____ $50 _____$25 Other$_____
Please charge my: ___ Visa ___ MasterCard
Card #: _________________________________________________ Exp. Date: __________
Name on Card: ___________________________________________ Signature: _____________________________
Address: _______________________________________________________________________________________
Telephone: ______________________________________________ E-mail: ________________________________