Just 5 DAYS TO GO!

It's time! We're now just five days away from the HFNZ 60th anniversary celebrations.

We are looking forward to celebrating this amazing milestone with you and everyone. Our 60th anniversary is sure to be a night you won't forget!

As you know, HFNZ is a charitable organisation, and as such relies on donations to make events like these possible. If you think that you, your partner, or a family member won't be able to attend, please let us know as soon as possible so that we can make the necessary changes to our catering and venues.

Thank you, from everyone at HFNZ, this event would not have been possible without your support.

It’s time for an update out about what’s happening in the world of the haemo walkers.

Last Sunday’s walk at Orton Bradley Park didn’t eventuate due to a number of factors. These included the Spring Fair being cancelled close to the time, sickness, and other reasons. However, we will continue to march on.

Our next walk is a lovely easy one to conclude the year.

OK, so what is the plan?

Victoria Park to the Sign of the Kiwi, via Harry Ell Walkway.

This walk starts from just above the Sign of the Takahe at Elizabeth Park (Car park is opposite Elizabeth Park and the dog exercise paddocks immediately below Victoria Park), slides gently below Victoria Park and goes up to the Sign of the Kiwi through bush and pine trees up to the Sign of the Kiwi where we can relax over a cuppa and a snack (HFNZ pays!) Walking time 1.5 to 2 hours return.

We will meet at 8:45 am at the Elizabeth Avenue Carpark (just below Victoria Park) for a 9 am start on Sunday 24/11/2019.  

Remember Kathy Fawcett and Lee Townsend may join us from time to time on our walks to see we are on the right track!!

 

We'll be sending out an email with more details in the coming weeks, so keep your eyes peeled. To find out more about either walk contact Ross at ross@haemophilia.org.nz. 

Following the recent changes to funded treatments for haemophilia A and B, we had some feedback that people were unsure about what to expect, and a little anxious about how the changes would affect them. With that in mind we're looking into running a series of one-day workshops in different locations around the country, looking at the psychological impact of changes in treatment regime on people with chronic medical needs. 

Currently, we have a very well-regarded expert lined up to lead the workshops, and we're in discussions around how they will be funded. The workshops are likely to be held in Auckland, Wellington, and Christchurch, probably early in the new year.

While it's early days, and we're still very much in the planning stage, we're at the point where we need to know whether there's a demand for these workshops. They won't go ahead unless people are actually interested in attending.

If this sounds like something you might be interested in please let Sue know by emailing her at ceo@haemophilia.org.nz.

As many of you will be aware, there's currently a real focus on outcomes for women with bleeding disorders. Historically women have been dismissed as 'just carriers', but the reality is that many women experience symptoms of bleeding disorders too. 

A number of our members have indicated that they'd like more opportunities for support and information around women and bleeding disorders. The best place to start is always to discuss your concerns with your Outreach Worker. They have plenty of great information, and years of experience supporting our members.

There are also lots of great articles and opinion pieces that come out regularly. We try to collect these as they appear, and publish them in Pānui, and Bloodline where appropriate. This month there's one on diagnostic terms for women with bleeding disorders.

There are also a number of different types of support available. If Facebook is your thing, why not try one of these groups:

• Women With Hemophilia
• Mild Matters: Mild Hemophilia Discussed
• Hemophilia Mother

At the most recent staff meeting, which followed the AGM on October 20/21, we finalised some events for the next year or so. Due to staff changes and other structural factors we ran fewer events over the last 18 months than we usually would. However, we intend to change that over the next 18 months!

First cab off the rank is the HFNZ 60th anniversary celebrations, as mentioned above. This amazing achievement is celebrated this weekend in Wellington, and we're all looking forward to it.

Here's what else we have lined up for you:

Inhibitors Weekend
March 13 - 15, 2020 in Auckland at the Quality Inn Parnell

Youth Camp
July 10 - 12, 2020 in Auckland at the Motu Moana Scout Camp in Blockhouse Bay

Adult Weekened
November 6 - 8, 2020 in Christchurch. Venue to be advised

National Family Camp
April 29 - May , 2021 in Kaiapoi at Blue Skies

As mentioned above, we're also planning a series of workshops in Auckland, Wellington, and Christchurch, where we'll explore issues related to changing treatment. These will only happen if there's a demand for them, so please let us know if that's something that you'd be interested in.

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

• An interview with Deon: The challenges for men living with haemophilia
• Diagnostic Terms for Women with Hemophilia
• Bleeding Disorders in the Bedroom: Sex and Hemophilia
• Hemophilia More Prevalent Than Previously Estimated
• The Lingering Effects of Recurring Joint Bleeds