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Best of Buddies, SURO, National Family Camp, PEP Talk, a Word from Piritoto, and the Latest News from HFNZ
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The latest from the Haemophilia Foundation of New Zealand - May 2016

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2015 HFNZ AGM. September 12th, Hamilton.

Best of Buddies


Now, we all know about the HFNZ Buddy Awards. That's when our members get the chance to recognise people, or organisations that have made a difference to them in the past year. Usually awards go out to medical people, Outreach Workers, even health related organisations. For example, this year Midland Outreach Worker Joy Barrett got an award, and so did the Waikato branch of the NZ Blood Service. 

However, this year one very special nomination stood out. 

Leo McCarthy, that's him on the right, has moderate haemophilia A. That means that sometimes he struggles to get about without a wheelchair, and that doing some of the things a regular 9 year-old does can be a bit of a challenge. This year Leo nominated his best mate Tom for a Buddy Award, that's Tom on the left, and with good reason.

Tom is the best sort of friend that you could ever wish for. He helps Leo when he needs it, pushes him about in his chair, hangs out with him, makes him laugh, everything you'd want in a best-friend. And he doesn't do it out of guilt, or pity, or because someone makes him. He does it because he likes Leo, because Leo is his friend. 

Here at HFNZ we think that Tom is amazing, and that Leo is lucky to have such a great friend. The people at the Manawatu Standard agreed, and featured the two boys in a story, which you can read here.

On Friday May 13th Leo presented Tom with his Buddy Award at assembly, in front of their whole school, to acknowledge all Tom does to make Leo's life as ordinary as possible.

Well deserved!

Stand Up Reach Out: Leadership Training 

SURO is a one-year international leadership development program for young men, aged 21-25, diagnosed with haemophilia A or B. SURO was started in 2007 by the University of Texas Health Science Center, Gulf States Hemophilia and Thrombophilia Center (UTHS). Today, it is administered by Global Blood Disorders, Inc.


SURO participants attend two mandatory program meetings held in September and the following March, with the interim project conducted in between the two sessions. This year, part I takes place in San Francisco on September 22-27 and looks at teaching participants the basic skills they will need to become leaders in the bleeding disorders community. Part II takes place in Hamburg, Germany in March 2017 where participants will have the opportunity to further build their leadership and communications skills and learn from one another by presenting their action plans. Between these two meetings participants will complete a project identifying issues in their communities that need support and defining action plans to address them.

This is a fantastic opportunity for you, or someone you know, to step up and really develop some great community leadership skills. If you're interested and want to find out more, just contact your Outreach Worker.

HFNZ National Family Camp: Step up and become a leader



 

From September 30th to October 3rd 2016, HFNZ are hosting our National Family Camp at Camp Keswick, on Holden’s Bay in Rotorua. The Camp is an educational opportunity for families who have a child with a bleeding disorder aged between 0 to 10 years, with some fun and relaxation mixed in too. Designed to cater to the whole family, this weekend is often considered the most important and helpful HFNZ event that parents attend. The theme for this year is Construction!

Right now we're looking for around 24 young enthusiastic volunteers to help run our Kids Club (children aged 8-12 years), Mini-Kids Club (children aged 4 to 7 years) and Crèche (babies to 3 years). Coordinators will also be present for each programme, but we’d really appreciate some extra people to help make sure that these children all have a fantastic time, while their parents are learning all they can about raising a child with a bleeding disorder.

To set you up for the weekend we’ll be holding Leadership Training at the camp venue on Thursday September 29th - afternoon and evening.

If this sounds like you, there's a volunteer job description available, and a volunteer application too. Contact leanne@haemophilia.org.nz to find out more.

PEP Talk - Ideas for Building Positive Families


Linda Dockrill, Outreach Worker

Siblings: Supporting your children without Haemophilia

Our siblings are the most enduring relationship we have over a lifetime. They can be a source of companionship and fun. I have witnessed compassion and sacrifice within these relationships too – especially in families with a bleeding disorder.
 
Watching parents worry, spending time away from home in hospital, and the stress impact of learning how to access a port or veins are a part of the siblings experience of haemophilia, no matter how a parent tries to shelter them from this. It is normal for children to feel jealous, ignored, or scared when a sibling has a chronic illness.   Reassurance and support is crucial for the unaffected sibling at this time.  Without adequate information it is difficult for them to understand why you are spending less time with them and giving more attention to their sibling. The following tips are useful to help siblings deal with changes in the family situation:
  • Explain the situation using age appropriate language and let them know they can talk to you about any questions they have.
  • Acknowledge that things are changing a lot and that you don’t know when that will change but offer them reassurance that you are all in it together as a family.  Perhaps find an example they would understand of another time when the family worked together- such as moving house, a new baby, or the death of a grandparent.
  • Reassure the sibling that you love them just as much and  they are just as important as the child with the bleeding disorder.
  • It is impossible to treat your children as equals – they are not equal – they are each unique and have specific needs.  Focus on children’s individual needs and pay attention to the core issue. What do they need to feel “right”?
  • While valuing each child’s uniqueness, ensure that family rules stay in place. Unless a bleed means they can’t participate, don’t excuse the child with a bleeding disorder from chores or  positive behaviour because of his/her bleeding disorder.
  • Treat children uniquely, but fairly.
  • Consider how the sibling observes you spending your time with the child with a bleeding disorder – including spoken warnings, hovering or even gasping when he does something.  It may seem that you are more interested in that child, and result in the sibling feeling less loved. Even if your time is limited you can provide constant reassurance through the day with hugs and kisses and making a plan to spend time together later in the day doing something they enjoy. If you make a plan ensure you carry it through.
  • Involve your children without haemophilia in providing care for their sibling. Help them feel useful and needed by helping to get the factor ready or helping set things up.
  • From the age of 3-4 years your children can learn about haemophilia in plain language. “when your brother gets an injection it keeps him healthy”. By the time they are at school, more complicated information about blood, joint and muscle bleeds and how factor helps can be added.
  • Pre-schoolers may have a lot of fears about ‘catching’ haemophilia or causing a bleed.  When their sibling is in pain they may feel guilty that he has haemophilia and they do not. Spend time with them and listen to their worries.
  • Use family meetings, even if your children are young, as a place to make decisions and share information. Ask every member for their opinion.
Lessons in patience, tolerance, empathy , compassion and independence are all a part of the experience for the child with Haemophilia and their siblings. Surrounding yourselves with other families who are living with a bleeding disorder can be a great way to find the support and ideas you need to manage these complex family dynamics. HFNZ runs a National Family camp every two years – the next one is Sept 30th – Oct 3rd 2016. Register now to join other families with young children who are working through the same issues you are and to share and learn from each other.

A Word From Piritoto

 
Tuatahi Pene - Te Reo

What does ‘Te Reo’ mean to me?

I remember contemplating about this exact same topic when I was in my teens. My grandmother and I spoke to each other in Te Reo as often as we could and at times the barrier between the Maori language and English language became blurred where we occasionally forgot which language we were speaking. Initially my awareness of the word ‘reo’ held meaning to express the Maori language and Maori language only, it wasn't until my education in college when the word ‘reo’ became known as a word representing all languages. My feeling towards how the word ‘reo’ is used today is that it should be only used to express the Maori language and create a new Maori word to convey other cultures languages.

Tracker Factory: Feedback Wanted


HFNZ are looking for feedback on how the Tracker Factory app works for you. We'd like to know anything you'd like to tell us: how easy it is to use, what works well, what could use some improvement, and what features could be added to make the app even better.

All feedback will be treated confidentially, and any common themes will be used to feedback to Pfizer, the app's developer.

To have your feedback included just email richard@haemophilia.org.nz

Here's Another way you can Help with National Family Camp


HFNZ National Family Camp is coming up.

From September 30th to October 3rd families from all over New Zealand, who have a child aged 0-10 with a bleeding disorder, will gather at Rotorua's Keswick Camp for three days of education and support, with a dose of fun and laughter thrown in for good measure. To help us provide the best educational programme we possibly can, we've set up a givaalittle page so that anyone who wants to can help make Camp as as good as it can be. Check it out and donate today:

https://givealittle.co.nz/cause/hfnzfamilycamp2016#

Even contributing just a small amount makes a big difference to what we can provide to the children and parents that attend the Camp.

P.S. If you haven't seen a Family Camp invite and registration form yet, be sure to contact leanne@haemophilia.org.nz ASAP!

Keep your eyes peeled for...

 
WFH Congress

The World Federation of Hemophilia are holding their Congress in Orlando Florida from July 24th to the 28th. This is a fantastic opportunity to get together with people with bleeding disorders from around the world, and to learn what's new in treatment and care. HFNZ have representatives attending and presenting at the Congress., including Ashley Taylor-Fowlie, who won the Susan Skinner Youth Fellowship Award to attend the National Member Organisation (NMO) Training.

If you have the ability to attend the WFH Congress it's well worthwhile.

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HFNZ Annual General Meeting

It's nearly that time of year again when HFNZ members gather at the Annual General Meeting to hear about how the organisation is getting along, and to elect new Council members. This year's AGM is hosted by Southern in beautiful sunny Christchurch on September 17th. Mark the date in your calendar, and come along to participate in the running of your national organisation. 

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National Family Camp

Coming up from September 30th to October 3rd is the HFNZ National Family Camp. This is a fantastic opportunity for families with young children who have a bleeding disorder to get together, support one another, learn plenty, and generally have a whole lot of fun. This year we're returning to the Keswick Camp in Rotorua. Those of you who have been before will remember how fantastic the facilities are and how much fun we all had.

Registration forms have been sent out. If we missed you, or you need another one, just drop Leanne a line at leanne@haemophilia.org.nz
 

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