Alberta News
February 2023
Alberta Chapter News
A Message from the Co-Chair
Dear Members,
 
Another year has come upon us and we are looking forward to the many exciting events, fundraisers and supports we provide each year to those living with bleeding disorders. 
Wishing you all prosperity and good health as we embark on a new year, 2023.
 
On May 5th, 6th and 7th I will be attending Rendez-vous hosted in Niagra Falls. Rendez vous is a bi-annual event which is hosted by CHS National and encompasses their AGM. This is an opportunity for chapters across Canada to come together to celebrate and share how we can continue to advocate and spread awareness for those living with bleeding disorders. We will send a small delegation there to represent the Alberta Chapter.
 
I know many of us cant wait for the warmer weather, as days start to get longer. Many of our kiddos take this as a sign that summer camp is almost upon us. And it really is! Our camp committee has been working hard to plan another awesome year at camp kindle. We look forward to seeing the returning faces and the new ones that will join us for an unforgettable camp experience.
 
Lastly, please continue to read our newsletters in full and watch for important updates about kids camp, our annual weekend retreat and AGM held in September.
 
Thanks to all of our members for your continued support. Your generosity never ceases to amaze me. Looking forward to seeing you at the AGM in September!
 
Hillary Wapple 
Co-Chair of the CHS Alberta Chapter
Ways we help
Where do my donation go?

We support our members through educational programs and webinars. We are dedicated to running a kids camp, creating awareness around bleeding disorders and even supporting the emotional needs of our members. We are a grassroots community committed to helping others who suffer with bleeding disorders. We also help those struggling with expenses related to their bleeding disorder.

Please reach out if you need assistance.

Upcoming/Past Events and Fundraising

Proper Techniques for Weight Lifting

In November of 2022 we held a weight lifting session for our members on proper techniques when weight lifting for hemophiliacs and those living with a bleeding disorder.

Thank you to Julia Brooks and Chad Budnyk for putting on this educational event.



Thank you to our sponsor.
Local Hot Soup Fundraiser

Help the Alberta Chapter support a small business in Fort Saskatchewan, Alberta.

Give back to the local community while also supporting your local bleeding disorder community!

Looking for easy nutritious meals? Freeze your soups and eat at a later date.
Orders Deadline is:
Wednesday, Feb 15th, 2023

Edmonton
Pick up date: March 3rd, 2023
8818 111 St,
Fort Saskatchewan,
Between 6:30pm - 8:00pm

Calgary
Pick up date: March11th, 2023
Northeast Calgary from 11:00am-1:30pm

*Please note: We need to receive at least $100 worth of orders in Calgary. As volunteers will drive the orders to Calgary for pick up. . If we are unable to meet that $100 goal, your money will be refunded to you.

Coming March 2023
Spring Flower Fundraiser
The Alberta Chapter will once again be running our annual flower fundraiser. Order your flowers, perennials, herbs and hanging baskets from us this year with gorgeous flowers from local Alberta and BC greenhouses.

Buy local, buy beautiful.

Stay tuned for more information in the coming weeks.
Kids Bleeding Disorder Camp
July 10th - 14th, 2023
Each and every year we know many kids look forward to camp. The long summer days are just a few short months away and campers are excited to go back and reconnect with friends old and new.

We have already started the planning and are excited about our annual bleeding disorder kids camp.

If you/or someone you know has kids ages 7-17 years old, with a bleeding disorder, who would like to attend camp, please click here for more details.

Registration will open shortly.
Please contact us at albertachapter@hemophilia.ca to get your registration package on March 1, 2023
Annual Retreat and AGM
September 8th, 9th and 10th, 2023
Save the Date
Join the Board of Directors and our members for a weekend retreat and AGM in September. All members are welcome. Stay tuned for more details coming soon.
St. Albert Nurse Brings Supplies to Ukraine
Last newsletter we brought you the story of a nurse from Alberta who collected supplies for Ukraine. Her story was recently shared in a local St. Albert, Alberta newspaper and mentions the generous donations sent by our members. Please see the story below.

“It was so valuable that I felt an obligation to the donors to ensure the product arrived safely,” said Shannon Boddez, who made her second trip to her ancestral homeland in early December.

Blood clotting factor products and hemostatic agents – all “gently expired” – were brought by Boddez along with other medical supplies, clothing and other items. When asked to explain the term “carefully expired,” Boddez said the products — donated by families affiliated with the Canadian Hemophilia Society — “can’t be used in Canada, but it’s like a miracle in Ukraine.”

Boddez, who has been organizing aid deliveries since early March, said she felt she had to deliver the medical supplies in person. “When you ship it, there’s no control over it, that’s why I left,” said the big-hearted nurse, who delivered the products to a Lviv hospital and provided practical instructions.

“There was a bit of teaching because they don’t have access to what we have,” she said.
As a nurse at the Royal Alexandra Hospital, Boddez changed shifts and used the vacation time to go on an eight-day trip to Lviv in late September and a three-day trek in early December. On both trips, she traveled with other like-minded Albertans she found through a Facebook-founded group called Ukrainian Volunteers of Edmonton.

Boddez, who has relatives on her mother’s side in Ukraine, began her humanitarian efforts in March after posting an appeal on her personal Facebook page. “I made a Facebook post for donations on a Wednesday and by Sunday I had 116kg of stuff. I broke down in tears,” Boddez said, adding that about 40 hospital workers responded. The next day, she shipped the items – including non-perishable groceries, diapers and warm clothes – to Ukraine.

“It’s snowed like crazy since then,” Boddez said as she arranged five more deliveries over the next few months. Their pace changed in late summer when the blood clotting factor products and hemostatic agents became available from the Canadian Hemophilia Society and deliveries became personal.

Boddez has teamed up with several UVE volunteers to facilitate the fall outings. One of the key players was Dave Bryenton, who made nine trips to Ukraine to deliver a variety of supplies including protective gear, while the other was Daniel Laskavenko, a Ukrainian-speaking peace officer who has sold military patches to raise funds for Ukraine.

In September, a total of 47 bags filled with donations were delivered by the Boddez and Bryenton team, while an identical number was collected for the December trip – including Laskavenko.

The team came to Ukraine with 47 sacks – all weighing at least 32 kg – for delivery.

Important Notices
Results of CHS Survey on Gene Therapy
This past summer, the Canadian Hemophilia Society (CHS) conducted an on-line survey on attitudes to and knowledge about gene therapy.

The results were presented and discussed at the CHS Blood Safety and Supply Committee special meeting on gene therapy this autumn in Toronto.

The survey, whose answers were anonymous, was targeted at Canadian residents with severe hemophilia A or B, fourteen years of age or older, who represent the patient group that might consider taking gene therapy in the ........continue reading

James Kreppner Memorial Scholarship and Bursary Program
Research Opportunity
Pain Narratives in Children with Sickle Cell Disease (SCD) Survey

  1. Participants complete an online survey about their pain, quality of life, disease characteristics, perceived discrimination, peer relationships and other psychological factors such as anxiety, sleep and depression. This takes approximately 35 minutes to complete.
  2. Their parent/caregiver completes a similar survey about the participant’s pain, quality of life, peer relationships and psychological factors, such as anxiety and depression. They will also answer questions about their own pain and quality of life.
  3. Participants may be asked to take part in a 1-hour audio-recorded interview to understand their feelings and memories about their past and current.
  4. Parent/caregivers may also be asked to take part in a separate audio-recorded interview about their memories and experiences related to their child’s pain experience.
 
As a thank you, participants and their parent/caregiver will receive a $15 e-gift card for each survey and an additional $15 e-gift card if they complete the additional phone interview.
 
In Case You Missed It
James Kreppner Memorial Scholarship & Bursary Program
We can’t foresee emergencies, but we can make sure that we’re ready for them when they occur. As you may know, the emergency departments across the country, especially pediatric ones, are struggling with staff shortages and a wave of patients with respiratory issues.

If you need to go to the emergency department for a bleed or any other issue, there are chances that you may be redirected to a different hospital than the one you are used to.

Make sure you carry your FactorFirst card to share important information about your treatment.

Talk to your nurse if you, or your child, need an updated FactorFirst card.