NZ isolation..my solution

NZ isolation..my solution

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NZ isolation..my solution

February 7, 2010 in Uncategorized

I am not actually sure what category to put this blog entry in. But seeing as this may affect my life into Lifestyle it goes. I'll start off with explaining what this is about. For the past...say, 6 months or so I have been vocally complaining about the isolation of NZ PKU people. Our lot does not seem to be extremly social, but I believe that their isn't really a way for us to be social. Sure we have PKU picnics, and a camp evey once in a while, but these picnics aren't very often. Now I can't blame the authorities for this, whenever I have turned up to a picnic, it's normally the PKU parents of young toddler PKU's looking for help and support for this tough life they suddenly find themselves in. Not alot of teens...if any. In the past we used to have a very dedicated family sending out a beautiful PKU newsletter every season, since they gave up the mantle of Newsletter editors the newsletter has ceased to exist as far as I knoq. Instead of continuing to complain about this isolation, I have decided to attempt to bridge this gap. I have sent off an email to Callum, a lady called Dianne, and a person from a company called Nutricia in order to ask for permission to start up an E-newsletter for the PKU's of New Zealand. If they agree I'm hoping to send it out via email to all the NZ PKU's who wish to recieve it. My wonderful supportive boyfriend agreed without my even asking to help, and has even suggested that we set up a website for the purpose. I told him we'd start small and then work our way up, first I need permissions, and then I'll need stories, recipes and maybe even competitions. I was hoping first for a few suggestions and also wondering if perhaps some of you wouldn't mind sharing your PKU stories for this? I don't want anything just yet, as I will have to wait and see if I get a chance to do this, I am pretty sure I will be able to. But untill then, hang tight and I'll keep you updated XD

4 Reviews of NZ isolation..my solution

  1. Registered: Sep 4, 2007

    Posts: 0

    Aurora, Nebraska

    What an awesome idea!!! That really shows a lot about the kind of person you are!!! It takes a lot of effort and dedication to begin completing such a task by yourself and I wish you the best of luck!!! I will do anything for you that I can in order to help!!!! Do you recieve the PKU News letter from the U.S.?? It might be a good kind of skeletal guidline for you when you are formatting your new newsletter. There’s a website for PKU News or I could also send you a copy of one of my issues. It’s full of information about up and coming treatment, new food products, low-pro recipes, and stories about people with PKU. Please keep us updated on how your project is going and let me know if there’s anything i can do to help!!!

  2. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    I think that’s a great idea. I think your hardwork to do it will be greatly appreciated by the NZ community. I would be happy to help in anyway I can. Let me know if you need a story at all. :)

  3. Registered: Nov 3, 2009

    Posts: 0

    , Massachusetts

    That is amazing… so many people will benefit from your dedication! Please keep us updated as to what help or support you want, I would be happy to help you in any way. : )

  4. Registered: Feb 2, 2010

    Posts: 0

    Palmerston North, INTERNATIONAL

    Thanks for the support guys. I’ll keep you posted.
    I’m very impatient for some replies, I have Dianne thinking it’s a great idea, she passed my email forward to a couple of others. Theres a guy setting up a PKU website for NZ, and a lady who does this rewards system thing as a website (we get reward points doing our bloodtests), I’d like to talk to them, it’d be very cool if we could integrate the newsletters into one of those sites. Send them out as an email, but also have them availiable for all to see on the site or something.
    Am going to email back asking to see if we could do anything, as I’d really like to get started!

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