Alberta News
October 2022
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AGM
Pine lake, Alberta
2022
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This year we held our annual retreat and AGM at The Salvation Army Camp at Pine Lake, Alberta. We had 35 people attended our AGM on Saturday, September 10th.
The meeting was full of information and highlights from the past and upcoming year and showcased our upcoming events, fundraising efforts and exciting news from the bleeding disorder community.
The following is a list of the current members:
Co-Presidents
Hillary Wapple
Carmen Nishiyama
Vice President
Leanne Owen
Treasurer
Ryan Borle
Secretary
Lori Champagne
Past President
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Directors
Caroline Champagne
Stephanie Bieganek
Danica Toy
Cleaven Pagani
Joanna Halliday
Christine Malcomson
Dawn Miller and Ahmad Sleiman will finish their terms with the board in December of this year.
Ahmad joined the board in 2020 as a director and a member of our youth committee. Ahmad has been accepted into school in the US and will hopefully be back once he finishes in a few years.
We also appreciate Dawn's time and dedication over the last 8 years. She has been an active member of the board, helping where ever needed. From fundraising efforts to helping organize the kids activity at this years retreat. Dawn will remain on her committee, helping to plan next years retreat and AGM.
We thank both Dawn and Ahmad for their time and commitment to the CHS Alberta Chapter Board of Directors.
Please Click here to read about the CHS national board of directors.
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Merry Christmas from the CHS Alberta Chapter
Board of Directors.
We wish all members a safe and happy 2022 holiday season.
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Are you searching for the perfect gift for that person on your list who doesn't have anything or doesn't want anything?
Have you considered a donation in their name to the CHS Alberta Chapter?
Donations fund programs directly supporting children and adults living with hemophilia and other inherited bleeding disorders.
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CHS Board Member Recognized by the Province for Advocacy Efforts |
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In recognition of the Platinum Jubilee year marking Queen Elizabeth II’s 70 years on the throne, the Alberta Government created the Queen Elizabeth II’s Platinum Jubilee Medal.
The commemorative medal is awarded to Albertans who have made a significant contribution to their province. A list of all recipients will be available once the program has concluded in February 2023.
Leanne Owen, Vice President of the Canadian Hemophilia Society was nominated because of her tireless efforts, skill and leadership working in digital communications for the Government of Alberta and also for her well-recognized and appreciated efforts in support of the Canadian Hemophilia Society, both at the provincial and the national level. She was recognized for her advocacy efforts for helping to get Emicizumab available in Canada and Alberta, for all hemophiliacs.
On Monday, October 3, 2022 Leanne was awarded her medal at a provincial awards ceremony.
Way to go Leanne!
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Sister You're Not Alone Podcast |
Joanna Halliday, Director of CHS Alberta Chapter, recently participated in a podcast about women's health and living with a bleeding disorder. You can check out her episode here.
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Alberta Chapter Event Survey |
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Supplies Collected for Ukraine |
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Recently the Alberta chapter was asked by Heather Bauman, RN, BScN
Hemophilia/Bleeding Disorders Nurse at the Stollery Children's Hospital in Edmonton,
if we were able to round up unused medical supplies and expired medications from our members to send to Ukraine, as she knew of a nurse who was rounding up supplies. In order to easily collect the supplies, we asked those attending our Weekend Retreat & AGM to bring anything they may have.
We knew that our members would have items to share, but we had no idea how much they would have to share.
Please see the note from the organizer of the trip.
"To the generous families & staff affiliated with the Canadian Hemophilia Association- Alberta Chapter,
I want to extend a huge thank you to the many people who collected & contributed medical supplies for Ukraine. When I saw the abundance of supplies, I felt a personal desire & responsibility to ensure everything was safely transported into the country & delivered to a site where it could be wisely & widely distributed. The medical supplies your team contributed were so happily received at a hospital in Lviv & I know that, unfortunately, they will be put to good use, treating & helping the heavily wounded on the front lines, as well as those in hospital. As one doctor said when he saw your donated collection of supplies, ‘This is like a miracle.’
Thank you for your contributions to helping those bravely defending freedom in Ukraine. For in those supplies, there was not only medical aid, but also support & hope. They see it & they appreciate it so very much. And I was so very proud & honoured to deliver it on behalf of all of you.
Shannon B.
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2022 Winter Wreath Fundraiser |
We are happy to announce our annual Christmas Fundraiser to sell beautiful plants and wreaths just in time for the holiday season.
Order deadline is Thursday, November 17th, 2022
Pick up on December 1st
Pick up on December 2nd
Order deadline is Thursday, November 17th, 2022
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Order today and support our cause with beautiful wreaths, indoor planters and boroughs.
Pick up on December 1st
Pick up on December 2nd
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Little Caesar's Pizza Fundraiser |
Thank you to all of our members who supported our fundraiser by purchasing and/or sending link to friends and family.
We sold over $1600 worth of pizza. These pizza kits are not sold anywhere else but through Little Caesar fundraiser program. They are such an easy family meal and taste so great! Three pizza in each box!
We hope to run this fundraiser again next year.
Please watch for more updates.
Thank you again to everyone who supported.
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Rare Blood and Bleeding Disorders Comprehensive Care Program
Foothills Medical Center Calgary Adult
The clinic will be closed on December 26 & 27, and Jan 2.
Factor Orders:
In preparation for the holiday season, we ask that you please determine how much factor you will need to get you through the holiday and place your order for home factor during the first 2 weeks in December. If you have any travel plans, make sure you request a travel letter as well as a few extra doses of factor in the event of any unforeseen disruption in your travel plans.
There have been some changes to staff:
Dr Poon and Carol (Nurse) have retired.
Melissa Ho will be replacing Carol, and we have a temp nurse Erin MacRae who will be working with the bleeding disorders clinic.
Erin will be with us for Dec - and hopefully longer.
Julia is expected back to the clinic in Oct.
We also have a fellow, Dr. Uminski who will be with us for the next year.
Finally, we would like to wish everyone a safe and happy holiday season! Stay bleed free!!!
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Southern Alberta Hemophilia Program
Alberta Children's Hospital
Please provide product orders over the holiday period by December 15th. There may be limited ordering ability and/or delays from Dec 21- Jan 4.
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Update from the Northern Alberta Pediatric Heme Team
Stollery Children's Hospital Edmonton
The clinic is asking that you kindly place your orders prior to Dec 22, 2022 as they wont be taking orders again until Jan 5th, 2023. Please ensure you have enough to last over the holiday season. If orders aren’t placed by then there’s a chance they may not be able to fulfill the full order within 2 weeks.
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We have been running very short here at the adult CFBD clinic.
Hilary has left and we have a new order clerk, who just started. Her name is Hyekyoung Jeong.
Dr. Ritchie remains our Director, he is working mainly with the immunodeficiency patient and HAE patients.
Dr. Sun & Dr. Bolster are working mainly with our Bleeding and Hemophilia, and Hemoglobinopathy patients.
Dr. Suresh has left to focus on her pediatric practice.
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Annual Retreat & AGM
Sept 10-12 2022
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This year we held our annual retreat and AGM at The Salvation Army Camp at Pine Lake, Alberta. We hosted 92 people for the week with 30 people attending our AGM on Saturday, September 10th.
Friday night saw people arriving late and socializing in one of the various meet up spots. Families played in the games room, swam and played mini golf late into the evening.
Saturday morning we got up bright and early for breakfast and then started our AGM. During the AGM the kids took part in crafts, making snow globes and drip paintings while our youth committee played field games where plenty of prizes were handed out. The rest of the afternoon was spent playing in the pool, paddle boating, hiking, enjoying one of the many hammocks or playing games in the games room. The night was capped off with a viewing of Jurassic World on the big screen. Kids and parents cuddled up with popcorn and treats, while other socialized around the giant bon fire in the woods. On Sunday, many families took advantage of the late check out and spent another day relaxing by the pool and enjoying the amenities.
Thank you to everyone who joined us and all of our amazing volunteers. We had an incredible time and look forward to seeing the bleeding disorder community again next year.
All members welcome, please see below for more information.
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Weight Lifting and You: Safe practices for those living with hemophilia
Open to all members
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Have you ever been interested in learning how to lift weights safely?
Already lifting weights but want to understand further how to strengthen muscles and joints without risk.
Join us for this two hour session on weight training for people with hemophilia and learn how to strengthen target joints and use proper techniques when lifting weights.
Physiotherapist, Julia Brooks, who has 17 years of experience working with people with bleeding disorders and a special interest in weight lifting. Along with Chad Budyk, strength and conditioning coach with 11 years experience, for an intensive session on weight lifting for hemophiliacs.
Who: People with bleeding disorders, ages 15-40 years of age
What: A 30 minute session to discuss weight training as well as safe lifting techniques followed by 90 minutes of a practical hands on session to review techniques and to problem solve areas of challenge.
Additional information: There will be an information package emailed out to you once you have registered with forms to be completed and returned to us. Please come dressed in gym attire with appropriate footwear and if you use prophylaxis please ensure you have had factor the day of the session. A small $25 fee will be required.
Light refreshments will be provided.
Thank you to our sponsor Bayer for supporting this important event.
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A Message from our Co-chair Carmen Nishiyama
World Federation of Hemophilia – Montreal Quebec
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This past May 8-11, 2022 my husband, grandson and I attended World Congress in Montreal. It was held downtown in their beautiful Conference Centre with easy access to the Old city, the Port, museums, shopping, and hotels. We stayed at an AIR B&B with in a long walking distance. Good exercise and a great way to see the city. There were social events and entertainment with great local food through out the conference.
The sessions were set up under different disciplinary's, medical, nurses, dental, psychosocial, physiotherapists, and general, with professional speakers on an array of topics. You were able to choose the subject you were interested in and attend those sessions.
This conference brings people from around the world together to share their stories and experiences from their own Bleeding Disorder Communities. It’s also an opportunity to meet with those from across Canada that you may not usually have the chance to meet. These conferences are held around the world every two years and gives you the opportunity to see other countries and how they cope with bleeding disorders.
Carmen Nishiyama
Co-Chair
CHS Alberta Chapter
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The Single Best Thing You Can Do For a Bleed
Desk Jockey Physio
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When you get a bleed, have you ever wondered what the best thing is to do? Should you rest, ice, keep it moving, or all of the above? We break down the single best thing you can do to help manage a bleed and get back on the road to recovery.
As a Physiotherapist with Hemophilia, Mitch brings a unique perspective to the care and understanding of those living with hemophilia.
Check out his videos and more information here on youtube.
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The CHS educational catalogue has been updated to include its newly revised FactorFirst card.
This reference guide also contains all sort of references and educational materials including but not limited to:
- Emergency care for patients with hemophilia and von Willebrand disease
- Identifying common joint & muscle bleeds
- PAIN: The Fifth Vital Sign
- Physical activity and sports
- Hepatitis C
- Vein Care: Looking after veins in the bleeding disorder community
- Tips for finding childcare a guide for parents of children with bleeding disorders
- How to recognize and treat bleeds and bruises
- Platelet function disorders
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Montreal, September 7, 2022 – “The Canadian Hemophilia Society (CHS) strongly supports Canadian Blood Services’ plans to work with a leading company in the plasma industry to collect more domestic plasma and have it fractionated in Canada for Canadian patients,” said Wendy Quinn, CHS President, after today’s announcement by CBS to create a partnership with Grifols Canada.
The partnership will see Grifols opening plasma collection centres across Canada with the goal of increasing domestic plasma supply to 50%-60% of what is needed to meet the ever-increasing demand for immunoglobulins, used to treat a range of serious, chronic conditions, notably primary immune deficiencies. These plasma collection centres will operate on the model of compensated donations, already well established in the U.S., Germany, Austria, Hungary and Czechia. Canadian Blood Services will continue to rely on the purchase of plasma-derived medicinal products from compensated donors in the U.S. for the remaining supply.
“The Canadian Hemophilia Society recognized more than two decades ago that plasma-derived medicines were of equivalent safety and quality, whether made from compensated or uncompensated donations, said Ms. Quinn. Over the past 25 years, they have demonstrated an impeccable safety record. Today, security of supply is the challenge. This long-term agreement will lead to a more secure supply of these medicines, one that is less at risk from supply chain interruptions.”
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For further information click here to read more by Canadian Blood Services
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Prophylactic, or preventive, treatment with an experimental replacement therapy called TQG202 safely maintained a low bleeding rate in people with severe hemophilia A.
That’s according to new data from a Phase 3 clinical trial reported in a recent study, which showed TQG202 worked to control bleeds in testing against an approved hemophilia replacement therapy.
Continue reading the article here.
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What is myWAPPS?
In July CHS Ontario, sponsored by Bayer, conducted a webinar on myWAPPS. Just in case you missed it, the call was recorded and is available below.
myWAPPS enables you to view real-time estimates of your factor level at any time, online or offline, based on your individual pharmacokinetic (PK) study. Your personalized PK information in WAPPS-Hemo is linked to myWAPPS by a healthcare professional at your hemophilia treatment centre, and your treatment regimen is set using the WAPPS-Hemo clinical calculator. myWAPPS also comes with an estimator function that allows you to see the forecast of your predicted factor levels.
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All patients with a bleeding disorder should wear something on their person to alert others of their condition, particularly if they’re in an accident.
If you have a school aged child with a bleeding disorder, 'No Child Without' a charitable program that works with schools to provide medical alert bracelets, will provide one free of charge.
The school must be registered with the program but there are over 6000 schools in Canada that are currently registered.
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Canadian Hemophilia Society Alberta Chapter | www.hemophilia.ca |
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