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Alberta News November 2024
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CHS Alberta Chapter Hosts 2024 AGM at Pine Lake | |
From left to right: Lori Champagne, Carmen Nishiyama, Caroline Champagne, Christine Malcomson, Cleaven Pagani, Adam Dubourdieu, Ashley Sidorchuk, Noel Anema, HIllary Wapple | |
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The Canadian Hemophilia Society Alberta Chapter recently held its 2024 Annual General Meeting (AGM) at Pine Lake, Alberta. The event provided an opportunity to reflect on the chapter's achievements over the past year and set the course for future initiatives to support those affected by bleeding disorders.
We are excited to introduce our 2024 Alberta Chapter Board of Directors:
- Hillary Wapple – Co-Chair
- Cleaven Pagani - Co-Chair
- Christine Malcomson – Vice President
- Lori Champagne - Secretary
- Joanna Halliday - Director
- Caroline Champagne - Director
- Ashley Sidorchuk - Director
- Noel Anema - Director
- Adam Dubourdieu - Director
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Newest Board Member
Introducing Adam Dubourdieu
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We are especially pleased to welcome Adam Dubourdieu as the newest member of our board. Originally from Newfoundland and Labrador, Adam moved to Edmonton in 2020 to be with his partner, Matthew. He works as a public servant with the Government of Alberta and has previously served on the board of the NL Chapter of the Canadian Hemophilia Society.
As a severe hemophiliac, Adam brings personal insight, and he is passionate about patient advocacy, health equity, and inclusivity. We are delighted to have him join our team as a Director.
For more information about our board and the work we do, please visit our website.
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2024-2025 Committee Listing | |
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We are currently seeking members to join our Kids Camp Committee, Governance Committee and Annual Retreat and AGM Committee. For more information on our committees, visit our website.
Annual Retreat and AGM
Karrie-Anne Tollenar, Cassandra Van Essen
Policy Committee
Hillary Wapple, Joanna Halliday, Adam Dubourdieu
Archive Committee
Ryan Borle, Joanna Halliday, Sarah Goodyear, Noel Anema
Fundraising Committee
Ashley Sidorchuk, Adam Dubourdieu
Kids Camp Committee
Joanna Halliday, Caroline Champaign
Governance Committee
Carmen Nishiyama
Sponsorship Committee
Ryan Borle, Sandy Hanna, Sheri Spady
If you are interested in joining a committee, contact us today!
Thank you to our committee members for their time and dedication.
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📢 Treasurer Position Available! 📢
The CHS Alberta Chapter is seeking a dedicated and detail-oriented individual to join our board as Treasurer. This is a fantastic opportunity to contribute to our community and make a difference.
Key Responsibilities:
- Manage financial records and budgets
- Oversee fundraising activities
- Ensure compliance with financial regulations
If you have a passion for helping others and experience in finance, we want to hear from you!
Apply now and be a part of something great!
For more information, email us at albertachapter@hemophilia.ca
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Help Us Advocate for Better Support for
Bleeding Disorders for Clinics in Alberta
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We need your voice to help improve care for individuals with bleeding disorders in Alberta! The CHS Alberta Chapter is urging everyone in our community to write to the Health Minister to advocate for essential support in our bleeding disorders clinics. You can make a difference by sharing your experiences and concerns.
Please consider copying the letter below, adding your own personal notes or experiences from clinic visits, and sending it to the Health Minister. Your unique perspective will help highlight the urgent need for improvements in our province’s care for bleeding disorders.
Dear Honourable Minister Adriana LaGrange,
I hope this letter finds you well. I am writing to you today to bring attention to a matter of utmost importance: the urgent need for enhanced support for individuals with bleeding disorders in Alberta. As the Health Minister, your leadership and advocacy are pivotal in ensuring that all residents of our province receive the comprehensive care and support they deserve.
Recently the CHS Alberta Chapter board of directors had the opportunity to review the Comprehensive Care Standards for Bleeding Disorders in Alberta, as outlined in the self-assessment report for the years 2022-2023. This document, prepared by the Canadian Hemophilia Society, sheds light on several critical areas where support for individuals with bleeding disorders falls short of the necessary standards.
Upon careful review of the self-assessment report, it is evident that there are significant gaps and deficiencies in the provision of care and support for individuals with bleeding disorders in Alberta. These shortcomings encompass various aspects, including but not limited to:
- Accessibility to specialized treatment centers and healthcare professional, especially for our aging population.
- Availability of essential medications, including clotting factors and other necessary treatments.
- Education and awareness initiatives to empower patients and their families with the necessary knowledge and resources.
- Coordination and integration of care services to ensure holistic and patient-centered approaches.
These deficiencies not only compromise the health and well-being of individuals with bleeding disorders but also impose substantial emotional and financial burdens on them and their families. The clinics report that they are growing in numbers, but that no additional space or staffing is being given to accommodate the increases. According to your mandate letter from Danielle Smith, addressing health care staffing challenges is an important initiative for the Province.
Additionally we believe that patients would be better served accessing bleeding disorder clinics for their emergency care needs, instead of being diverted to emergency rooms, which increases wait times.
It is imperative that we address these challenges promptly and comprehensively to uphold the statement on the Alberta Government website to “focus Alberta’s health care system on providing consistent, timely access to care – when and where you need it.”
Therefore, I urge you, as the Health Minister, to take decisive action to enhance support for individuals with bleeding disorders in Alberta.
This may include:
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·Allocating additional funding to improve access to specialized treatment centers and essential medications.
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Implementing education and awareness campaigns to promote understanding and empathy towards individuals with bleeding disorders.
- Collaborating with healthcare providers, patient advocacy groups, and other stakeholders to develop and implement comprehensive care strategies.
By prioritizing the needs of individuals with bleeding disorders, we can demonstrate our commitment to a healthcare system that is equitable, compassionate, and responsive to the needs of all residents. Together, we can make a meaningful difference in the lives of those affected by bleeding disorders and ensure that they receive the support and care they rightfully deserve.
Call to Action:
We ask that you provide to the HTC is Alberta – particularly the HTC at FMC receive a dedicated area to provide urgent care and treatment to our patients.
Thank you for your attention to this matter. I am confident that with your leadership and support, we can work towards a brighter and more inclusive future for individuals with bleeding disorders in Alberta.
Email the Health Minister
Letter to the Health Minister
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SUPPORT A WORTHY CAUSE
and purchase some chocolates today!
This holiday season, treat yourself and your loved ones to delicious Purdys chocolates while supporting a great cause!
The Hemophilia Society Alberta Chapter is excited to launch our Purdys Chocolate Fundraiser, and we need your help to make it a success.
By purchasing your favorite chocolates through our fundraiser, a portion of the proceeds will go directly to supporting individuals and families living with bleeding disorders in our community.
It’s a sweet way to give back!
Important Dates:
- Order Deadline: Monday, December 2, 2024, by 12:00 PM
- Calgary: Sunday, December 15, 2024
- Edmonton: Sunday, December 15, 2024
Here’s how you can support:
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Browse the delicious selection of Purdys chocolates.
- Place your order by the deadline.
- Share this fundraiser with friends, family, and colleagues - spread the joy of giving!
Your support helps us continue providing essential services, programs, and advocacy for the bleeding disorder community. Thank you for making a difference!
If you have any questions, feel free to contact Ashley Sidorchuk at asidorchuk01@yahoo.com.
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Donate a Car to
Canadian Hemophilia Society Alberta Chapter
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Save the Date - Rendez-Vous 2025 | |
SAVE THE DATE
Kids Bleeding Disorder Camp 2025
July 7 - 11, 2025
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Our 2025 Kids' Camp will take place from July 7-11, 2025 at Camp Kindle.
It's a week full of fun, adventure, and friendship for kids in our community.
Stay tuned for more details, and be sure to save the date—we can't wait to see you there!
Click here for more details or email us at albertachapter@hemophilia.ca
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If you or someone you know would like to sponsor kids camp, please contact us by email. | |
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Highlights from the 2024
Annual Retreat & General Meeting
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A Fun-Filled Weekend at Pine Lake
Our 2024 Annual Retreat and AGM at Pine Lake was an incredible success! Over the weekend, we gathered with members, families, and friends for a perfect blend of relaxation, fun, and community connection with a total of 72 people attending.
This year’s theme was Carnival, and the festive atmosphere kept everyone entertained throughout the event. The carnival-themed activities were a hit with kids and adults alike. The weekend also included:
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Swimming: Families enjoyed some splashing fun in the water, making the most of the beautiful Pine Lake surroundings.
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Crafts: Children got creative with arts and crafts, making colorful souvenirs to remember the weekend by.
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Food Truck: Saturday night’s dinner was a crowd-pleaser, with a delicious meal served from a local food truck that everyone enjoyed.
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Mini Golf Scavenger Hunt: We organized a scavenger hunt with a mini-golf twist, giving attendees a chance to explore and compete for prizes.
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Campfire: In true retreat fashion, we wrapped up the evening with a cozy campfire, where members gathered to share stories and roast marshmallows.
The retreat provided a wonderful backdrop for our Annual General Meeting, where we discussed the progress we’ve made and the exciting plans we have for the future. A heartfelt thank you to everyone who participated, and we look forward to next year’s retreat!
Mark your calendars for September 5-7, 2025.
As a quick update, we used to hold our annual retreat at the Goldeye Center, and some have asked if we could return there. Unfortunately, the Goldeye Center is currently not accepting bookings and does not have a reopening date at this time.
For more information on the Annual Retreat and AGM , [click here].
All members and their guests are welcome!
Check out everything Pine Lake has to offer.
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Niklas Radek, who has been using Factor Prophylaxis since diagnosis in 2019, and Hemlibra since July 2022, with some top-ups of factor treatment when needed, was diagnosed with Severe Hemophilia A at the age of 6, he is now 11 years old. Initially, this diagnosis led to the difficult decision to stop playing hockey due to the high risk of injury. During this early phase, while he was on Factor 8 Prophylaxis, he continued to face restrictions that prevented him from returning to hockey. However, in the face of these challenges, Nicklas discovered a new passion for baseball at the age of 8.
For two years, while on prophylaxis, Nicklas played baseball with a constant underlying concern about potential injuries. In 2022, we transitioned to Hemlibra, which allowed him to pursue more advanced play in a development league this spring and summer.
He joined the Alberta Cal Ripken League, with head coach Ramon Valde who supported Nicklas throughout the year. This league and the coaches demanded increased practice, more games, and heightened competition.
The results were nothing short of remarkable. Nicklas played through the entire summer season without any injuries. His coaches were aware of his condition and agreed to treat him just like any other player on the team. Nicklas demonstrated tremendous dedication, hard work, and skill, eventually becoming one of the standout players on his team.
A highlight of his season was participating in the Cal Ripken Pacific Northwest Regional Championship in Meridian, Idaho. Despite competing against older and stronger teams from the US, Nicklas and his team performed exceptionally well. They managed to secure a victory in one of their games, which was a significant achievement and a tremendous confidence booster for all the players.
He now has his eyes set on participating in the Cal Ripken World Series held in Branson, Missouri next year in August.
Nicklas’s success and the newfound confidence he has gained are a testament to the effectiveness of Hemlibra. His journey from having to stop hockey to thriving in a competitive baseball league is a story of triumph and resilience. We are incredibly grateful for the support and progress Hemlibra has provided.
We hope that sharing Nicklas's story will inspire others and highlight the positive impact of the treatments. Hemophilia should not hold anyone back to go and follow their dreams!"
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2025 CHS National Awards
The 2025 CHS National Awards will be handed out next May during Rendez-vous 2025 in Winnipeg.
The deadline for submitting nominations is January 31, 2025.
Please find attached a complete description of all the awards.
To download copies of the nomination forms, please go to:
www.hemophilia.ca/national-volunteer-awards
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Opportunities to participate in research
Click here for more information.
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Did you know that the Canadian Hemophilia Society offers a variety of helpful publications and resources to support our community? Whether you're a parent, teacher, or healthcare professional, there’s something for everyone. These resources are available on the CHS website, and we encourage you to explore and take advantage of the valuable information offered.
Here are just a few of the resources you’ll find:
- Things Every School Personnel Should Know
- HEMOPHILIA – What School Personnel Should Know: A helpful guide for teachers and school staff to better understand hemophilia and how to support students with this condition.
- Management of Women with Bleeding Disorders: This publication provides essential information on how to manage the unique needs of women with bleeding disorders.
- Apps and Videos: Access a variety of educational apps and informative videos, making it easier than ever to learn about hemophilia and other bleeding disorders.
These resources are designed to educate and empower both individuals living with bleeding disorders and those supporting them. Be sure to check back often as we continue to update our library of materials.
Visit the CHS website today to explore these and other publications!
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Medical Alert
Did you know? Medical alert bracelets and necklaces are crucial for ensuring immediate care and attention in emergencies, especially for children with specific medical conditions. We are pleased to offer assistance to families in need of these life-saving accessories.
Each applicant may receive up to four medical alert bracelets or necklaces, with a lifetime maximum benefit of $250. This support can make a real difference in emergency situations, providing first responders and medical professionals with essential information at a glance.
If your child requires a medical alert bracelet or necklace, please reach out to us. We're here to help make safety and peace of mind accessible for your family! Email us today
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RESEARCH CALL FOR APPLICATIONS
Deadline: November 29, 2024 (Grant period of April 2025 to March 2026)
Dream of a Cure, CHS Research Program
Summer 2025 Dream of a Cure Studentships in Inherited Bleeding Disorders Research
CHS/Pfizer Care Until Cure Research Program
CHS/Novo Nordisk Psychosocial Research Programme
CHS – Bayer – ADVANCE Canada Research Program
The Canadian Hemophilia Society (CHS) is proud to put out its call for applications for its research programs for the 2025-2026 grant period. The deadline to submit applications for all the programs is November 29, 2024. The eligibility criteria and conditions for all our research programs have been revised and updated. Of note, applications must now be done on-line at the links provided on our website under each research program heading and, eligibility has been expanded as follows:
Dream of a Cure: the program is no longer limited to hemophilia A & B-related projects so that projects focusing on von Willebrand disease, rare factor deficiencies, platelet function disorders (and platelet pathophysiology) and other congenital and acquired bleeding disorders can be supported.
Dream of a Cure Studentships in Inherited Bleeding Disorders Research: similarly to our basic scientific research program, the studentships are no longer limited to hemophilia-related projects but include all inherited bleeding disorders. Furthermore, science students in any year of an undergraduate program can apply in addition to medical students in any year of training;
CHS/Pfizer Care Until Cure Research Program: the areas of interest to which investigators are encouraged to submit proposals has been expanded to include assessing joint function, FIX/FVIII assay discrepancy across gene therapy recipients, methodology for monitoring patients treated with anti-TFPI therapies; all projects included but not limited to the list will be considered;
CHS/Novo Nordisk Psychosocial Research Programme: applications from Social Workers, Nurses, or Physiotherapists with professional experience in a hemophilia treatment centre (or other comparable settings in which care has been provided to people with hemophilia and other inherited bleeding disorders) or persons interested in the field of inherited bleeding disorders will be considered. Students in a PhD program in one of the allied health disciplines may also apply. Professionals who have appointments in universities and who can dedicate time to research are encouraged to apply. Professional experience in a hemophilia treatment centre is desirable but not required.
CHS/Bayer ADVANCE Canada Research Program: applicant must be a physician or Ph.D. or professionals from the allied health disciplines (ie. Nursing, Physiotherapy & Social Work) with professional experience in a hemophilia treatment centre (HTC) or other comparable settings in which care has been provided to people with hemophilia and other inherited bleeding disorders. Professionals who have appointments in universities and who can dedicate time to research are encouraged to apply. The proposed research must have relevance to current practice in bleeding disorders care and may incorporate a broad spectrum of quantitative and qualitative research methods addressing professional practice with individuals, families, groups and communities, organizational issues, public health, and education. The research studies should aim to provide better data and tools to help the treaters assist patients in successful ageing.
DREAM OF A CURE
Through funds provided by the Hemophilia Research Million Dollar Club and the CHS, the CHS provides basic scientific research grants and studentships aimed at developing treatments for hemophilia A and B, von Willebrand disease, rare factor deficiencies, platelet function disorders and ultimately, finding a cure.
Dream of a Cure, the CHS Research Program and the 2025 Dream of a Cure Summer Studentships in Inherited Bleeding Disorders Research on-line application forms links as well as the general criteria and conditions are available by accessing the CHS Web site at https://www.hemophilia.ca/chs-dream-of-a-cure-research-program/. For Dream of a Cure, individual grants will be awarded to researchers for one to two years for amounts up to $75,000 per year while support will be offered to interested Canadian medical or science students for up to 4 months for a maximum stipend of $6,000 per student.
CHS / PFIZER CARE UNTIL CURE RESEARCH PROGRAM
You will find at https://www.hemophilia.ca/the-chspfizer-care-until-cure-research-program/ the information and the on-line application link for the CHS/Pfizer Care until Cure Research Program offered by the CHS in collaboration with Pfizer Canada. This program allows Canadian investigators to conduct research on medical and psychosocial aspects of bleeding disorders. Grants for one to two years with a maximum of $75,000 per year will be awarded for clinical research, including outcome evaluation, in fields relevant to improving the health and the quality of life for persons with Hemophilia, persons with von Willebrand disease or other inherited bleeding disorders, persons with related conditions such as HIV or hepatitis C infection, and carriers of an inherited bleeding disorder.
CHS/NOVO NORDISK CANADA PSYCHOSOCIAL RESEARCH PROGRAMME
The CHS/Novo Nordisk Canada Psychosocial Research Program was created to engage hemophilia program professionals/graduate students from the allied health disciplines (ie. Nursing, Physiotherapy & Social Work) in research activities addressed to understanding the psychosocial impact of hemophilia and other inherited bleeding disorders and to improve the quality of life of persons and families whose lives are affected by these disorders.
The primary intent of this program is to offer one or two $20,000 research grants, to a maximum of $40,000 for one year. Depending upon the number and quality of applications, funding for different amounts is possible, as is the offering of more than one research grant, within however, the allotted total budget stated above.
The major portion of the grant would be to cover the research time for the successful candidate(s), including the time for research assistants. A small amount can be devoted to project expenses.
Multidisciplinary Collaboration:
Collaboration with multidisciplinary care providers and/or between two or more hemophilia centres is accepted and encouraged. Collaboration efforts may include, for example, social work, physical therapy and genetics. It thus may be possible for a hemophilia centre team to jointly submit a cooperative research project. Additionally, inter-regional applications will be considered.
Grants will be offered for a one-year period to begin in April 2025.
More detailed information and the on-line application link are available by accessing the CHS Web site at https://www.hemophilia.ca/the-chsnovo-nordisk-psychosocial-research-program/
The Canadian Hemophilia Society – Bayer ADVANCE Canada Research Program
The Canadian Hemophilia Society – Bayer ADVANCE Canada Research Program was created to engage Canadian hemophilia treaters in activities to identify and research key issues in the ageing hemophilia population.
The research program will support studies that aim to:
- Identify and provide insight into key issues associated with the ageing hemophilia population
- Identify how management of age-related co-morbidities should be adapted to those with hemophilia
- Create and deliver evidence-based information to health care practitioners (HCPs), the public and policy makers that will lead to improved care and QoL for older Canadians living with hemophilia
The primary intent of this program is to offer one or two $22,500 research grants, to a maximum of $45,000 for one year. Depending upon the number and quality of applications, funding for different amounts is possible, as is the offering of more than one research grant, within however, the allotted total budget stated above.
Additional information, the on-line application link, the eligibility criteria and conditions for the research program can be found on our website at this link:
https://www.hemophilia.ca/research-chs-bayer-advance-canada-research-program/
The research must be conducted in Canada by researchers affiliated with Canadian universities and not-for-profit-related organizations.
If you require further information, please do not hesitate to contact Mr. Michel Long at the CHS National Office at 1-800-668-2686 or by e-mail at mlong@hemophilia.ca.
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Montreal, July 5, 2024 – Canada’s two health technology assessment (HTA) agencies have made conflicting recommendations on two gene therapies for hemophilia B.
Earlier in 2024, Canada’s Drug Agency (CDA; formerly called CADTH), which makes recommendations on novel drugs to public health plans outside Québec, recommended that both Beqvez (fidanacogene elaparvovec) and Hemgenix (etranacogene dezaparvovec) be reimbursed, conditional on a price reduction, for adults with severe and moderately severe hemophilia B. Over the last month, however, the Institut national d’excellence en santé et en services sociaux (INESSS), which provides......continue reading
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