Pinecrest 2022 Gallery
Pre-Registration Camp Wanakita
Pre-registration for Hemophilia Ontario’s camp program at YMCA Wanakita in 2023 is now open, and will be available until Monday October 10th, 2022.
Please make sure you read the following important information thoroughly.
**IMPORTANT THINGS TO KNOW**
- At the present time, vaccination is not a requirement to attend camp in 2023.
- Pre-registration closes on October 10, 2022.
- Hemophilia Ontario sponsored campers will be provided with an update on next steps by October 14, 2022.
- Please note that when selecting a 2 week spot, campers are responsible for attending the entire 2 weeks. We are not able to fill the spot for 1 week with another camper if plans change.
- There is a $200 registration fee. If you are unable to pay the fee, please contact Alex McGillivray, Manager of Camp Programs for other options. Your registration code will not be sent until payment is made, or you have connected with Alex.
To pre-register your camper(s), please visit: https://hemophiliaontario.typeform.com/wanakita2023
If you have any questions, please contact Alex McGillivray, Manager of Camp Programs at amcgillivray@hemophilia.on.ca
Queen’s University Research Study
Research Study: “Let’s Talk Period” for Hemophilia Carriers: The Use of Online Resources and Social Media to Improve Care: Part 2
Queen’s University is conducting a research study that aims to develop evidence based educational materials focused on when and where hemophilia carriers should seek care for bleeds and about abnormal bleeding symptoms experienced by hemophilia carriers.
You will be asked to provide knowledge and input to develop the content for these educational materials using the recently published WFH (World Federation of Hemophilia) Guidelines for the Management of Hemophilia, 3rd Edition. If you are interested in participating, you will be invited to join a Working party with other health professionals and members of our research team for a 1-hour session conducted electronically over Zoom video conferencing.
If you are interested in participating in the study, please email or call Julie Grabell at grabell@queensu.ca or 613-533-6000 x 75223. She will be able to answer any questions you might have regarding the study.
The Empower Study
Upcoming Webinar: What to Expect When You are Expecting (or Considering!)
Upcoming Webinar: September 14th at 7pm via zoom
What to Expect When You are Expecting (or Considering!)
You must register for this free event. Register here.
Join Dr. Rachelle Blackman, hematologist at the New Brunswick Hereditary Bleeding Disorders clinic at the Moncton City Hospital, for a presentation of “What to Expect When You Are Expecting (Or Considering!)”
Whether currently pregnant or considering, this information session will aim to provide tools during pregnancy with a bleeding disorder. Topics covered will include food for thought if considering pregnancy, how to prepare for your primary care and specialist healthcare visits, what to expect while pregnant and afterwards, the role of key healthcare team members, potential barriers, and health issues to consider for both parent and baby.
Please contact Natalie Philbert at nphilbert@hemophilia.on.ca for any questions.
New Article From the Canadian Medical Association Journal
“I thought everybody bled like that:” A Patient’s Experience with Von Willebrand Disease
As a kid, I had frequent nosebleeds and bruising. Sometimes, I’d have nosebleeds daily and need to apply pressure for 20–30 minutes. That’s what I was known for. As I got older, I’d get bruises on my legs or arms. I always had a bruise somewhere.
To continue reading, please click here
Research on Women’s Bleeding Disorders
Have You Checked Out the Available Research on Women’s Bleeding Disorders?
On the heroixx.ca website, we have a collection of articles that cover relevant topics, including, menstruation, pregnancy, and aging. These research articles are free to access and can keep you up-to-date on what is happening for those who menstruate and women’s bleeding disorders!
Check out our articles here: Articles – Heroixx
Family Member Support Program Launch!
You’re Invited! Family Member Support Program Launch
Join Hemophilia Ontario for the launch of our newest program, which aims to help introduce new families to our incredible Hemophilia Ontario community – a valuable hub of information support for bleeding disorders!
When: Sunday, August 28, 2022 – 9:30am – 7:00 pm (Park closure)
Where: Centre Island, Toronto
Price: Subsidized pricing for families of $100/family (bbq lunch, ride passes and activities for children are included in this fee!)
Orientation and educational sessions will be held at 10am for families so please be sure to arrive on time!
You must register for this program!
Registration Link: https://hemophiliaontario.typeform.com/to/rv2RkkBM
Feel free to reach out Sarah Levy, Manager Member Services and Support for any questions, concerns, or program support at slevy@hemophilia.on.ca or 647-354-5660.
John Plater Scholarships – Deadline for Applications is August 8th!
Fill out your application here: H.O.-John-Plater-Scholarship-and-Bursary-Program.pdf (hemophilia.on.ca)
Hemophilia Ontario’s scholarship and bursary program is named in honour of John Plater, a tireless advocate for people with bleeding disorders and those who were affected by the tainted blood tragedy.
John was born in 1967, and had severe hemophilia A. He contracted HIV from tainted blood, and went on, with many others, to draw attention to the issue of tainted blood. His efforts contributed to the establishment of the Krever Inquiry and compensation for those who were infected with HIV and Hepatitis C. John graduated from Osgoode Hall Law School in 1998, and maintained a legal practice assisting those affected by the tainted blood tragedy.
John served our community through involvement with the Canadian Hemophilia Society and Hemophilia Ontario. He served on many significant committees, including as co-chair of the Ministerial Advisory Council on the Federal Initiative on HIV/AIDS, chair of the Ontario Hepatitis C Task Force and chaired the HIV/AIDS Community Advisory Panel of St. Michael’s Hospital. He was active at Thornbury First Baptist Church, serving as Moderator and chair of the Deacons. John passed away from complications related to HIV/AIDS in 2012.
John was a mentor, friend, leader and hero to many in the bleeding disorder community. This program recognizes and celebrates John’s commitment to our community and to helping others.
Rare Bleeding Disorders Presentation – July 14th!
July 14th at 5:30pm via Zoom – You must register for this event!
This session we shine a spotlight on rare bleeding disorders, starting with the platelet dysfunction of the rare disease Hermansky-Pudlak Syndrome. Our guest speaker, Sidney Klips-Hryciuk will discuss her fragmented diagnosis journey, delayed menstrual management, and living with a bleeding disorder as a high performance athlete and artist.
