Youth camp,World Haemophilia Day, Welcome to our new OR Workers, Emergency planning, Upcoming events, and all the Latest News from HFNZ |
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The latest from the Haemophilia Foundation of New Zealand - March 2021 |
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Plans are coming together for the first HFNZ national event of 2021. We are booked in to the Blue Skies venue in Kaiapoi, just out of Christchurch, on 16 -20 July. Friday 16 July will be leaders training day, then attendees will arrive on Saturday 17 July.
The theme for the camp is Seven Summits, to reflect the accomplishments of mountaineer Chris Bombardier. Chris didn't let his Haemophilia get in the way of scaling the highest peaks on all seven contintents. We'll be watching the Bombardier Blood Movie, and enjoying a variety of activities related to adventure planning and preparedness.
Growing up is exciting, challenging, and often very confusing. When a bleeding disorder is added to the mix the challenges of young adulthood only increase. Youth Camp, for 10-18 year-olds, uses a combination of education, fun, and peer and mentor support, to help young people move to the next stage of managing their condition. The focus is on being well-informed and better able to make decisions about their bleeding disorder treatment, education, work, life-style and relationships.
Registration information will be distributed closer to the time, so keep you eye on your inbox. For more information contact admin@haemophilia.org.nz |
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World Haemophilia Day 2021 |
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World Haemophilia Day is Saturday 17 April. This year the theme for WHD is adapting to change. This is particularly relevant given the impact of Covid-19 around the world.
While New Zealand has done particularly well in mitigating the effects of the pandemic, we have still had to adapt to new ways of living. World Hemophilia Day is about bringing the global bleeding disorders community together. We stand with people with bleeding disorders around the world, many of whom are not as fortunate as we have been. The world has changed greatly over the last year, but one thing hasn’t: we are still in this together.
To show our solidarity HFNZ have arranged for some landmarks around the country to light up red for World Haemophilia Day. So, on 17 April get out to a venue near you and send us your pics of the red lights.
Here's where you can go:
Rotorua: Te Manawa, night market overhead lights, Eat Street, clock tower, main Council building, and the main archway into the Government gardens
Hamilton: Victoria St bridge
Christchurch: Airport arch and control tower
Wellington: Michael Fowler Centre
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To celebrate World Haemophilia Day the Central region are holding an event for HFNZ members at the Murrayfield Café in Levin. Join them on Saturday 17 April 2021 to share your stories of the past year and to share a meal.
Kids and adults alike will be able to enjoy the petting zoo, gardens, and the museum before and after lunch at your leisure.
Venue: Murrayfield Café, Levin (café menu)
Time: Saturday 17 April 2021 - 11.30 am (for 12.30 pm lunch)
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Welcome to our new Outreach Workers |
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On 15 March the HFNZ staff team were pleased to be joined by two new Outreach Workers. Laura-Lee Perawiti started as the Midland Outreach Worker, while Rosie Maguire started as the Southern Outreach Worker. Both Rosie and Laura-Lee will be reaching out to members in their areas over the coming weeks.
Here's a bit about them...
Laura-Lee descends from the tribes of Waikato, Raukawa, Rereahu and Maniapoto and currently resides in Kirikiriroa (Hamilton).
She is a registered indigenous Māori and bicultural social work practitioner, and has a background in tertiary and primary education, disability including mental health, child protection, and whānau advocacy. She has worked and held various roles within Government, non-Government and Iwi sectors.
Laura-Lee also has a social services business that provides indigenous Māori and bicultural supervision to frontline government and non-government practitioners and students, including education and training in traditional Māori healing and transitional support services.
Outside of these roles she is a mother to three young men, and newly a grandmother. She is an iwi board member, and an effective hapu, marae, and community member.
Rosie is a registered primary and drama teacher, and began her career in the classroom. After leaving teaching she worked in project management before starting a career in media. Working her way up to a being a producer for children's television, Rosie has had the pleasure of working on many different creative projects and has worked with communities from all around the country.
She is looking forward to jumping into a new line of work through the Foundation and connecting with the haemophilia community of Te Waipounamu.
We welcome Laura-Lee and Rosie to the HFNZ whānau.
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Will you be ready in an emergency? |
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Following the Kermadec earthquakes and the resulting tsunami warning, some of our members raised the issue of disaster preparedness for people with bleeding disorders. While the need remains for all of us to have a plan and an emergency kit ready for if disaster strikes, for those who require regular medication there is an additional layer of complexity.
In addition, Civil Defence has some excellent tips for people with additional medical requirements. The key one for HFNZ members is to have a usable supply of treatment products in reserve to cover at least seven days. Also, if your treatment product requires refridgeration, make sure you have an alternate power source, or provision for storing your treatment effectively. There are more tips for people with special requirements here: https://getready.govt.nz/prepared/special-requirements/
Remember, emergencies can happen anytime, anywhere. You can take steps to be prepared. |
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Are you thinking of studying? Perhaps you'd like to move into a different area of employment? Or maybe you have some vocational training you'd like to finish?
The Allan Coster Educational Endowment Trust (ACEET) offers grants to help people with bleeding disorders get access to vocational training and education.
The ACEET grants are not just for university study. The ACEET trustees will consider applications for primary, secondary, undergraduate, postgraduate, trades, or vocational training. That means, if you have a bleeding disorder, a dream, and a course that will help you to get where you want to be, then an ACEET grant could be what you need.
Previous recipients have used their grant to complete courses from reading assistance, to business management, to graphic design. If it is going to improve your prospects, then it's worth getting an application in.
Grant applications are considered three times a year. To check the next application deadline, or apply for a grant, just contact your Outreach Worker.
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In order to increase the reach of HFNZ communications, and improve member outcomes, we continue to update member details in the database. The most pressing details are email addresses and dates of birth. Over the coming weeks Outreach Workers will be contacting members to update their details.
Having a current email address for you and your whānau is important as we try to manage costs. 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.
The other essential detail is date of birth. We need this so that we can be sure you're on the list for age-restricted events, like Adult Weekend, Youth Camp, and Women's Weekend. If we have no DOB for you the database won't filter you in to age-based mailing lists. Again, if you're not sure that we have your DOB, please let us know. |
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Are you living with Haemophilia A?
Auckland Clinical Studies (ACS) and P3 Research are looking for volunteers to help study a potential new treatment for congenital Haemophilia A.
To take part in this study you will need to:
- Be male, aged 18 to 75 years
- Have a diagnosis of congenital Haemophilia A
- Be in good health or have other medical conditions that are well controlled.
You cannot:
- Have any other known coagulation or haematologic disorders
- Be taking medication to suppress the immune system
The study involves:
- 2 clinic visits, and a follow up phone call
- All study participants will receive the investigational drug (no placebo)
- You will be reimbursed for attending study visits and for reasonable travel expenses
For more information and to see if you may be eligible:
Auckland: Phone 0800 STUDIES (0800 788 3437) extension 105 or 157 to speak with one of our team, or apply online by visiting www.clinicalstudies.co.nz and follow the links to our ‘Register interest/Register now’ page
Wellington: Phone 0800 737 883 to speak with one of our team, or apply online by visiting www.p3research.co.nz and follow the links to the 'current studies' page.
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The last walk on Sunday, 28 March, went very well. It's lovely to see people turning up every month for these. Again, we want to thank Kathy Fawcett and Lee Townsend from the Christchurch HTC for being there to support us.
The next walk is scheduled for Sunday 18 April. We're looking at heading back to the mighty Rāpaki track.
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Here's what HFNZ have lined up for members in the coming months:
World Haemophilia Day
Saturday 17 April
Attend the Central event, or get a photo with the red lights near you.
Youth Camp
17 - 20 July. 2021.
Blue Skies, Kaiapoi.
Women's Weekend
2021. Date and venue to be advised.
National Family Camp
2022. Date and venue to be advised.
If you have any questions about any of these events, please don't hesitate to drop us a line at info@haemophilia.org.nz. |
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