| Marfan Documentary - call out for contributors. |
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Pixi
Super Moderator
Joined: 06 Mar 2009
Posts: 2086
Location: Pixiland
54072 Fibrillin
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 Posted: 4:45 pm, Sat 27 Feb, 2010
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Welcome to the forum, Alex. Best of luck with the film
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Shybushbaby
Super Moderator
Joined: 05 Mar 2009
Posts: 1131
Location: Marple, Cheshire
35843 Fibrillin
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| Posted: 3:53 pm, Sat 27 Feb, 2010
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Alex
I just wanted to welcome you to the forum.
I think it is wonderful that you are producing an informative documentary about Marfans and how it effects us on a daily basis.
It will be nice to see something that inolves seeing other people with the condition and how the get on with their lives and not just concentrating on the medical side of things.
I wish you well in your venture and can't wait to watch the finished film.
JO. XXX
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alex_bluffield
New Marf
Joined: 23 Feb 2010
Posts: 2
124 Fibrillin
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| Posted: 12:29 pm, Fri 26 Feb, 2010
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Thanks for the words of support. Myself and Natasha watched 'In My Hands' a very moving documentary about Marfans this week. A choreographer teaches teenagers with Marfan's movements tailored to their long arms and bodies. It contains great interviews and is a very moving film. If I can make anything half as good, I'll be happy. In My Hands is available from the National Marfan Association in the US, if anyone else is interested.
Thanks, Alex. |
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Darren
Site Admin
Joined: 26 Feb 2009
Posts: 2143
Location: Cheshire, UK
52844 Fibrillin
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| Posted: 9:18 pm, Wed 24 Feb, 2010
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Cuddles
Site Support
Joined: 04 Mar 2009
Posts: 1705
Location: east kent
54451 Fibrillin
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| Posted: 8:47 pm, Wed 24 Feb, 2010
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Hi Alex , welcome to our Forum
Ok firstly i am sorry to hear that your wife is having difficulties with fatigue etc , which sadly is very common with this condition , but i hope in time something can be done / found to help her and others in the future .
Also it is good to hear your daughter is free of the condition .
Alas , personally i dont think i could appear on film , and that comes from someone who hates having his photo taken as everyone can vouch for , BUT i wish you well with your plan
best wishes
andy
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alex_bluffield
New Marf
Joined: 23 Feb 2010
Posts: 2
124 Fibrillin
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| Posted: 2:21 pm, Wed 24 Feb, 2010
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Hi my name is Alex and I'm an independent filmmaker and my partner has Marfan's Syndrome. I'm making a new documentary about Marfan's (provisionally entitled 'Marfan's Syndrome: A Life Less Ordinary') with backing from the Marfan Association UK (although it will be independently funded). I'll be a doing a 5 minute spot at the Marfan Association Information day at St.George's hospital on 13th March which will officially launch the project. I'm looking for people would be willing to appear in the film. Below is an outline of the project and motivation behind it. For more info and if you're interested in being a contributor, please get in touch, drop me an email - enquiries@a2bpostproduction.co.uk
Marfan Syndrome: A Life Less Ordinary.
A Documentary about living with Marfan's Syndrome.
Format: Documentary 40 mins (UK), DVD release, film festivals, possible tv broadcast.
Background/motivation: At present in this country there is not a film for families affected by Marfan Syndrome. There are informational DVDs on specific aspects of the condition, homemade YouTube clips on the web, but nothing to supplement the information on paper – the pamphlets, newsletters etc or the shared experiences that can be found on the internet. Last year, a documentary was produced in the US, entitled 'In My Hands', however it's currently only available on request from the National Marfan Foundation there.
In the Guardian Weekend magazine on the 19th December 2009, there was an article by the journalist and author Simon Van Booy, entitled 'Ghost of Christmas past'. His wife died suddenly, 2 years ago from an aortic dissection – she had undiagnosed Marfan's Syndrome. The article described the new Xmas traditions, Simon and his 5 year old daughter had invented in her absence, to find a way through this family time of year. The article had a profound impact on me. It saddened me and perhaps represented my greatest fear of being left behind as a single parent. It also made me feel extremely angry that people are still dying because of not being diagnosed with Marfan's.
My partner and love of my, life Natasha Duggan was diagnosed with Marfan's Sydrome at the age of 15 shortly after the death of her mother who also had Marfan's and died of an aortic aneurisym. Natasha and her younger sister Helen have been monitored with regular echocardiograms throughout their lives measuring the dilation of their aortas.
In 2004 Natasha gave birth to our daughter Eve at St.George's hospital London after a monitored pregnancy. Eve does not have Marfan's – there was a 50/50 chance. Until the pregnancy, Marfan's had not really had much impact on our lives. Natasha lives life to the full and worked as a community artist. We've done some amazing things together like walking up Mount Sinai in Egypt to watch the sunrise. Despite the monitoring, Helen had an abodominal (descending) aortic dissection in 2006 and Natasha had a Type A (ascending) aortic dissection in 2007 requiring emergency heart surgery. We were at a friend's wedding reception at the time. Her aortic arch was replaced with a graft (the 'David' method), sparing a valve replacement.
Since the op, Natasha has made a good recovery. Life is very different though. She can't lift heavy objects (like our daughter!) and gets fatigued easily, so takes regular rest. At present, we are waiting for another operation, as Natasha has an aortic aneursym in lower part of the aorta, where it dissected.
Film outline:
Marfan's Syndrome: A Life Less Ordinary (working title) will be a documentary film about living with Marfan's Syndrome and the impact, good and bad, it has on the lives of people with the condition and their families. It will seek to illustrate how one condition can affect people in very different ways. It will explore their hopes and dreams for the future. I wish to film (subject to consent), a cross-section of individuals and their family members. Each person will show a different aspect of Marfan's and share their personal experiences of living with it.
Some issues I'd like to explore in the film will be –
Marfan in the family. Looking at family life with children with Marfan's – the joys, the practicalities, the challenges. Interview intercut with observational footage of family life.
Teenage Marfan's – exploring issues of difference, self-image and self-esteem. Interview intercut with observational footage of contributor pursuing hobbies, interests and everyday activities.
Aortic dissection/aneurisym. What it means? Living with it after it happens. Interviews with people that have had surgery for a dissection and their experiences.
The 'exostent'. Tal Golesworthy, the man who invented his own fix for Marfan's Syndrome!
With a background in engineering, he set about designing a special jacket to fit around the aorta, whcn he found out he needed surgery. 'Show & Tell' Interview with Tal, who will tell us his story (subject to consent). Also – Testimonial Interview if one of the 19 people who have received an exostent are willing to be interviewed.
The Creative Marfan. I'd like to explore the relationship between Marfan's Syndrome and art/creativity and how they intersect. The pianist Sergei Rachmaninoff is the most famous musical example, but he's not around! There's a new generation of musically talented Marfans. The composer John Tavener (who I would like to approach to narrate the film) and the young American musician Bradford Cox. There are also many Marfans who paint, sculpt etc. Interviews, intercut with footage of them creating.
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