This website was the blog we kept...
Saturday, September 27, 2008
SATURDAY 7:30A EASTERN (11:30A GMT)
SUNDAY 2P EASTERN (6P GMT)
MONDAY 9A EASTERN (1P GMT)
MONDAY 1:30P EASTERN (5:30P GMT)
CNN also streams the show at the following website: http://cnn.com/ireportforcnn
Friday, September 12, 2008
Friday, September 05, 2008
Did you know Robert Knight is going solo to the South Pole for Cystic Fibrosis? Well, he is! And I ran into him a few months ago and last tuesday we headed off into The Walls of Jerusalem National Park in the remote Northwest of Tasmania and found some snow. A superfit young man and a 40-something old CF 'sufferer'; what a team. Robert patiently waited for me to cough up all the hills, which tested his patience on the first night when we did not get to set up tents in the snow till 7pm - well after dark! We had a great time and I feel much better again. Photos are <here>.
Visit Robert's website: www.southsolo.com and see if you can spare a few $$$ towards his expedition!
Monday, August 25, 2008
Sunday, August 24, 2008
Friday, August 22, 2008
The Southern Cross screening was excellent with about 60 people attending. Many of our friends and families showed up, and Lucas bought 6 bottles of wine which he made me present to some of the major contributors of our project. I should have thought of that, only K and I are pretty broke right now! I still feel like giving away all the books to all the great people, but we just cannot afford to do that unfortunately. Nothing extra was charged for David, Lucas and myself to sign the books. Gratis!
Barbarra Mills from the ACT CF Association was officially handed a collection of donations from the two screenings for their association. I hope it was a good amount.
Now I need to arrange a NW Tasmania screening ASAP! Our biggest support came from there!
I was honoured. Met a bunch of interesting researchers and other medical people who will hopefully be able to use some of our books/DVD! I also met my first ever genetic councellor, Jennifer Hogan.
Thursday, August 21, 2008
The newsletter also had an order form in it to pre-order the books/DVD!
Thank you Berenice!
Monday, August 18, 2008
Those who ordered the books alone will go out in a matter of days!!
Thank you all for your enormous support!
Walter and the COFE team!
We had a great weekend in Hobart doing the launch at the CF Nurses conference. The doco was well received and we sold a heap of books!
There were several newspaper articles and some radio and TV coverage too. Off to canberra today to polish the doco with Lucas and to show it to the Canberra community!
Unfortunately my laptop died and has not been resurrected yet, causing delays in reporting...
Here is one article:
This is an old one I just found.
Wednesday, August 13, 2008
Tomorrow is the launch in Hobart! Followed by a radio interview on ABC 936 Drive at 1745 with Louise Saunders . There should also be coverage in the Mercury as well as a spread in the Sunday paper. Gosh, we are in the spotlight! Lucas and my mother are here and we are all tickled pink with the attention. Let's hope people like our work.
Sunday, August 10, 2008
Katherine's children's book has arrived! Walter and the Mucous Monster looks fantastic. We are very happy with the result. The shipping took a little long as it came from the USA. We are still awaiting the postcards that we had ordered to go with them. The postcards are coming from VistaPrint, and we had hoped they would've been here by now.
We have been soo pleasantly surprised with past orders coming in well within the expected time-frames that we are now scared when they don't arrive just as quick the next time! Walter and the Mucous Monsters for instance arrived within the expected time frame, but we were sure they had been lost in transit! Maybe we are just a little nervous. August 14 is looming around the corner!
Tuesday, August 05, 2008
The cover colour looks a little purple and artificial, but hey, I am happy! I was proud to drop off my copy to the Tasmanian Library who had written to me months ago to advise me of my obligation to make a legal deposit: Legal deposit is a statutory provision which obliges publishers to deposit copies of their publications in major libraries in the country or state of publication.
Friday, July 25, 2008
There is no public show for Hobart yet, but we are looking for a venue to play the documentary on Friday evening, 15 August, if someone can come up with a place!
Also, STOP PRESS READ ALL ABOUT IT, we have a Canberra launch organised for the week after:
Wednesday 20 August at 3pm at the ANU John Curtin School of MedicalI flew to Canberra last week to help finalise the documentary with Lucas. These are the planes we fly in and out of Devonport with - this picture taken at Melbourne Tullamarine Airport.
Gold Coin Donation for entry into the Finkel Lecture Theatre,
Building #131 Garran Rd, Acton
21 August at 6:30pm: The Canberra Southern Cross Club in Woden will show the
movie to up to 400 people.
Gold Coin Donation for entry in their Top of the Cross theatre. Remember they have Happy Hour
downstairs from 530pm.
All those who ordered a pre-purchase will get them soon now! As soon as we get the books/DVD they will be mailed out!
I am very happy with it. Kathryn Whitfield has helped me greatly improve the text by making some key recommendations wrt to tense used in the book, and helped rewrite the first half of the book in which she culled all the extraneous unimportant bits to make it all more readable. So I need to bring this draft to the printers for printing and hope the book arrives in time for the conference on 14 August!
Also, at the printers right now is Katherine's children's book; Walter and the Mucous Monsters. We still owe the illustrator a final payment and we hope to sent that to him with a copy of the book! We got postcards made for the Mucous Monster as well as a general promotion tool. The postcard is the book cover itself.
Sunday, July 13, 2008
Wednesday, July 09, 2008
Sent: Wednesday, 9 July 2008 4:14 AM
To: firstname.lastname@example.org; email@example.com; firstname.lastname@example.org
Subject: Happy Birthday to Bruddah
Surreal... Here I am in my hotel room, 12.30 in the morning flicking through the 30+ channels on my TV before I retire for the night. Then I'm struck by a little text caption on the bottom left of the screen: "Walter van Praag"... Confusing, I thought. I'm sure I checked in as Frank van Praag - then I listen and look. It's CNN! Showing about 5 mins of footage of the great COFE with music and commentary. Mentioned the site, the music, and at the end the reporter wishes you a happy birthday! iReporter. Surreal! Now I'm going to sleep. Well done, bruddah.
Saturday, June 28, 2008
Friday, June 20, 2008
The reason they got me was because 3 months ago I put the 3 minute teaser on CNN:'s i-report <here> .
Time to celebrate, and I have the perfect place.... See picture of The upstairs pub at the Blackthorne Inn.
Friday, May 23, 2008
Katherine had worked all night last night and is getting ready to work all night again tonight... That is dedication for you. What a wife!
Tom from Devonport Patient Transport lending a hand in his lunchtime...
Sarah Webb from The Advocate was there to cover the story!
We sold most of our merchandise and we are only left with CF bumper stickers and over $250 in funds to Realise the Dream!
Wednesday, May 21, 2008
On Tuesday we had the official CF TAS Cheque Presentation where Aaron (president) presented me with a $3000 cheque to contribute towards our project, and specifically the children's book. Their logo will proudly feature on the back of the cover of The Mucous Monster. The Southern Cross TV reported on the event.
Thursday, April 24, 2008
Q: What is Cystic Fibrosis?
A: Cystic Fibrosis (CF) is the most common life threatening, recessive genetic condition affecting Australian children.
Q: How does it affect people?
A: CF affects primarily the lungs and digestive system, however with improved medication and treatment life expectancy has been extended considerably.
Q: Who gets CF?
A: CF is an inherited condition. For a child to be born with CF both parents must be genetic carriers for CF. They do not have to have CF themselves.
Q: How common is CF?
A: Approximately one in every 2500 babies will be born with CF. One born every four days.
Q: How many young people have CF?
A: Approximately 3000 and there are 1 million carriers in Australia.
Q: How is CF diagnosed?
A: In Australia, all babies are screened at birth for CF. A blood spot test is applied and if this test proves to be positive a sweat test will be done to measure the amount of salt in the sweat and it is with this test that a final diagnosis is made.
Q: What is their life expectancy?
A: The average age expectancy is around the mid 30s, but not so long ago that was teenage years or younger. The great improvement has been brought about by research.
Q: What are the symptoms of CF?
A: People with CF may have the following symptoms:
• Persistent cough, particularly with physical effort.Q: Is there a cure for CF?
• Some difficulty in
breathing or wheezing with effort.
• Tiredness, lethargy or an impaired
• Frequent visits to the toilet.
• Salt loss in hot
weather which may produce weakness.
• Poor appetite.
A: Cystic Fibrosis is not curable at this time. However, with today’s improved treatment most people with Cystic Fibrosis are able to lead reasonably normal and productive lives. A great amount of time, energy and money is being directed towards finding new and improved ways of treating CF and finally finding a cure.
Q: Is CF contagious?
A: CF is not contagious. Coughing is a frequent symptom of CF. Some people are afraid they may catch it, but CF is an inherited condition which is present at birth. You cannot “catch” CF and you cannot give it to anyone else.
Q: How is it treated?
A: Intense daily chest physiotherapy to move mucus in the lungs. 40 enzyme replacement tablets each day to aid digestion.
Q: Why have things improved?
A: Mainly due to research and better knowledge and management of the condition.
Q: Does the CF National Organisation receive Government funding?
A: No – The States receive funding to support the CF Community but no money for research.
Q: Is there a cure?
A: No – but it can be found.
Q: Why “65 Roses” Day?
A: “65 Roses” is a small child’s effort to pronounce his sister’s condition. As he couldn’t pronounce Cystic Fibrosis, he called the condition “65 Roses”.
Thursday, April 17, 2008
Was very special to be inside the studio at WIN TV and seeing Susie life! One of the highlights was tasting the **braised** Moroccan mini roast that Victoria Hansen prepared in the studio!
Ross Symonds my favourite newsreader from my past was there as well. Of course I did not recognise him :( My memory is like a seive!
Wednesday, April 16, 2008
Lucas is filming me here. I am talking to the wooden cat! We have hours and hours of narrating and interviewing to do. We interviewed David one day, I met one of our sponsors today, we visited the hospital for a full lung function test - took hours and hours! I visited government departments to get tax concessions for our funding - to no avail. Life in the fast lane! Not getting around to my friends :( or families. Work to be done!
I should be on TV on WIN next Friday between 10am and 11am! I will try and tape it somehow and put it on the blog!