National Family Camp 2023 marked a very special occasion for one of our younger members. Seth Brackstone administered his own treatment for the very first time! 

This is an awesome milestone for anyone with a bleeding disorder, and we are very proud of Seth.

 

On the morning in question Seth was understandably nervous. Under the watchful eye of haemophilia nurse specialist BJ Ramsay, Seth prepared his treatment product, before being guided through the process. It went very smoothly, and Seth did very well.

 

Being able to administer his own treatment is a big step towards independence for Seth. He is now able to attend camps and other away-from-home activities, comfortable in the knowledge that he can look after himself appropriately. 

 

Word is that he has continued to do his own treatments ever since. Well done Seth!

We are very happy to announce that we have a brand new outreach worker in the Southern region. We're please to welcome Vic Turner into the HFNZ whānau.

 

Here's a bit about Vic, in her own words...

 

"Kia ora everyone. My name is Vicki Turner although I do prefer Vic. I'm a proud 50 something wife and mother. My husband Burt and I manage a blended family with 6 combined offspring ranging from 35 years down to 12 years, with 2 Moko. 

 

Burt, Hugo(12), and I live on our 52 hectare horse/gorse block in Okaruru bay (Goughs Bay) Banks Peninsula, Canterbury.

 

I originally trained as a nurse in the 80s at Burwood Hospital,then transferred to Templeton hospital until its closure. After this I took employment  at a treatment facility for young men before formalizing my training as a counselor at Vision college. I have since specialised in Equine assisted psychotherapy which I have been using in my private practice for the last three years. 

 

My husband and I have recently swapped positions. He now looks after the house,the horses and teaches Hugo while I have the office and begin my exciting career with the Haemophilia Foundation."

Now that National Family Camp has successfully completed, we're looking ahead to all the other targeted events that we run.

 

In order to make plans and book suitable venues, we're thinking about what our key national events are, and when we're going to run them over the next 2-3 years. Our goal has always been to run each of these key events once every two years.

 

Here's the plan so far:

 

• 15 - 17 September 2023: Youth (18-30) event in Wellington
• January 2024: Youth (18-30) sailing event in Auckland
• 1-3 March 2024: Teen and Youth Camp in Auckland
• 26-28 July 2024: Women's Wellness Weekend in Taupō
• 6-9 February 2025: National Family Camp in Ngāruawāhia
• Oct/Nov 2025: Adult wellness weekend in Christchurch. 

 

Of course, things like pandemics, cyclones, and earthquakes can put spanners in the works. However, getting broad plans in place early minimises disruptions in the event of unforeseen circumstances.

The World Federation of Hemophilia regularly run in-person and online opportunities for education. While these are often not timed well for us here in Aotearoa, they are valuable learning experiences, and often involve opportunities to share and interact.

 

You can find out what's coming up here: https://wfh.org/wfh-events/

 

WFH Global Policy and Access Summit (GPAS)
The third edition of the WFH Global Policy and Access Summit (GPAS) will take place from July 6 to 7, 2023. Presentations and discussions during the two-day virtual summit will centre around increasing access to diagnosis, treatment and care for people living with bleeding disorders. The conference will include speakers and participants from local and international partner organizations, national government representatives, healthcare professionals, WFH NMO leaders, and bleeding disorders advocates

 

The 13th World Federation of Hemophilia (WFH) Global Forum will take place in-person from November 17 to 18, 2023, at the Fairmont Queen Elizabeth hotel in beautiful Montreal, Canada. This year’s forum will focus on the latest advances in treatments and technologies for bleeding disorders.

There are a couple of regional events coming up this month.

 

On Sunday 25 June at 10:30am the Northern region are holding their second coffee group at Columbus Coffee in Sylvia Park Mall. The Northern team hope that this will become a regular event. Contact Darian at 027 512 1114 to find out more.

 

In order to get the most out of your membership, it's important to keep your details up to date. The key details are email address and date of birth. 

Posting invitations and information to members is an expensive business, and where possible we would prefer to make contact electronically. If you have an email address, but you're not sure that we have it, please let us know.

If we have no DOB for you we can't filter you in to age-based mailing lists, like Adult Weekend, Youth Camp, and Women's Weekend. Again, if you're not sure that we have your DOB, please let us know.

Here's what HFNZ have lined up for members in the coming months:

 

 

If you have any questions about any of these events, please don't hesitate to drop us a line at info@haemophilia.org.nz.

• Dosing complete in Phase 3 trial of Belief BioMed’s gene therapy candidate
• ‘Vein-on-a-chip’ could help scientists study thrombosis without animal models
• Parenting a teen with a bleeding disorder can cause dislike
• The gene-therapy revolution risks stalling if we don’t talk about drug pricing
• Hemophilia management takes a toll on patients, yes, but also families