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Marfan Support and Information in NSW |
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About MarfanS Health Issues Personal Resources & News Marfan Queensland
online enquirydiscussion forum
community
photo gallery
resources
publicity in Oz plus . .
- Marfan awareness film
Also see Marfan Trust UK (pdf.file) for their Marfan research report Spring/Summer 2009
or otherwise, see Marfan Trust's website
Cosi Fan Tutte and one of the charachters , Guglielmo, otherwise Shane, who is also the announcer on this YouTube video .
Here's another one from Opera Australia.
For other videos related to this particular Opera, see
- You Tube.
and - Costume & Set
*
- Wayne rides his bike from Goulburn to Canberra Hospital on the 16th of May '08,
to honour his friend Gordon Mercovich , who died a year ago aged 29, because of MarfanS.
Gordon Mercovich - shown here demonstrating to a group of junior cadets on a bivouac, how to cross a river by rope. Gordon was instructor in the Airforce cadet movement.
“He was firm, fair, an incredible mentor, and a great guy”
Wayne's bike ride was on Friday, 16May08, from Goulburn to Lake Burley Griffin took him 3 hours and 18 minutes.
Funds collected doing the bike ride also helps Canberra Hospital to do up the hospital's relatives' room, if you like to donate towards it, call Wayne Russell on
6161 1384 or 0402 526 070
Wayne in the middle.
- Trish Carey, back from her Marfan awareness walk/bike ride, from Adelaide -Canberra on the 30th of January 2008, after 26 days.
Trish's daughter Lisa died 3 years ago, of aorta dissection, 28 years old.
- Narooma News
Parliament House Canberra 30th of January 2008, 4.30 pm
Trish, Prof.M.West and wife Jennifer meet Mike Kelly, representative of PM Kevin Rudd.
Also check this page on pdf.
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August 2007
- The Royal Flying Doctors newsletter - A life line to the
McInerneys in particular Jaxon, who shared a couple of medical articles with my son Richard.
(Jason is the young man in the picture on Australian Doctor, left corner - a bit lower down this page).
Jaxon had a spinal rod operation and aortic surgery
(thanks RFD, for the snail mail Newsletter. We saw a bit of their actions on their 'office' in Alice Springs - very interesting)
- our disc.forum where (logged in), you'll be able to see the New Zealand news article Chocolate Pledge - colum Little Battlers, in topic Britannys Newspaper Article, with The Press pdf.file.
- Australian Story with All in the family broadcast by the ABC Aus. on 11sept06.
this picture of Rosemary Latto was showing for quite a while as the broadcast of Australian Story started.
- TranscriptAll in the family (the Latto family) on Australian Story.
- Jabe Babe, a Heightened Life broadcast by SBS Aus. on 29nov05
- DVD of Jabe Babe available from Marcom price check on 10may08: $39-95 for individuals.
- SBS
broadcast schedules.
- trailer on JabeBabe on YouTube
- Scarlet Alliance, re.Jabe Babe - realistic
- Jabe "Babe" passed away Sunday, 6april08. Jabe died of prosthetic heart valve thrombosis. Apparently she had been recommended a valve replacement in 2007.
*
What started the publicity 'adventure' for me was an article by Dr.Norman Swan in Sydney Morning Herald, about heart problems, a certain percentage of them caused by life style and the remainder of problems he left to the readers' to fill in. So I wrote to him, which spun off an invitation to the ABC studio, on -
12June2000
- Health Report ABC radio National on Marfan syndrome and aorta dissection - presenter
Dr.Norman Swan interviewed heart surgeon -
Prof.Vincent Gott, from John Hopkins Hospital.
&
aortic aneurysm, John Hopkins Hospital
Trudy was interviewed by Brigitte Seega, ABC producer of Health Report. Might just add she also had an interview with the presenter, Ms Matilda Swift of the Dutch program on SBS, which was a bit more relaxed.
Well - that didn't seem too difficult, discovered Australian Doctor on internet and approached the doctors'weekly newspaper's editor. Didn't take long when I received an e-mail from free lance reporter Sue Quayle, who asked could she have a chat with me. She also had an interview with the Head of the Marfan Research Group, Dr.Lesley Ades, based in the Children's Hospital Westmead and the result was the article, that appeared on 27nov2000
- recognize the young man ? (Jaxon used to be on the home page)
Marfan therapy update
with the subtitles -
- Marfan can hide in picture of health
- Almost every family has their own private FBN1 gene mutation
Meanwhile Health Report's Marfan syndrome and aorta dissection sparked off a few other articles. On 26Aug2000 there was - Game of Life and Death on Olympic Games, its champions and the risk that (very) tall participants can run the risk of death - by Peter Lalor, reporter for the Daily Telegraph. I hadn't needed to ask him, he just sniffed up the story for the Olympic Games.
* the article raises the question "How well are sports professionals checked out, particularly those ones taking part in strenuous and contact sports?"
In Good Medicine October 2000, my short story was printed in Letters by readers. The year following Sun Herald in Doctor's colums and also Woman's Day (Australian) had a very short article on Marfan syndrome. The newspaper The Australian took its time but finally had an article on MFS.
I did try (Australian )Women's Weekly, but you wouldn't believe how difficult that is !
You may think that I'm merely trying to show off, but I'm not. All of the above is old hat by now and I'm just trying to convince you, that you too can do your bit in publicity because, some people might have Marfan syndrome while unaware of it and for that reason they need any Marfan publicity being made.
Names and words in green are links to other websites or pages.
Katherine Lyons, Queensland, Albert & Logan News
&
Steps of courage
Sunderland UK and Marfan awareness - Sunderland Echo and Liam Gash. Dad pleads for awareness for disorder.