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Geraint
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Quote Geraint Replybullet Topic: Confusion
    Posted: 01 Apr 2008 at 9:48pm
Can anyone put all the acronyms and seemingly different organisations into context for me?

Probe, Aspect, Gord, Fort, and others all seem to be competing / conflicting with each other for attention. What are they? Why are they not all under one umbrella?

Similarly the valiant runners and cyclists with their different approaches / aims / organisations.

I will, by pure chance, be able to support the bike ride if required.

I will definitely be looking out for our brave runners, from the pavement, on the marathon course.

How can they be recognised?

Has our Charity a number of entries in the Marathon, or are they members who managed to get personal entries through the ballot?

If we do have any guaranteed entries could someone who is a new member like me get a chance to run on behalf of us all next year?

Finally, what is the difference between photodynamic therapy and Halo 360?
Would pro active therapies like these be a better bet than PPI and periodic endoscopy?
It seems like wait and hope, then have a look now and again.

Sorry if all the above sounds simplistic, I'm still trying to work out what is going on and coming to terms with my diagnosis.

Most of my reassurance has come from reading what you, fellow patients, have said.
There doesn't seem to be much input from the doctors.
Will this be different if I come to the AGM?
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DerekL
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Quote DerekL Replybullet Posted: 03 Apr 2008 at 9:17am
Dear Geraint
I agree the acronyms are confusing and medicine is full of them!

Here is an attempt to explain some of them: Probe - the patient part of
our
charity the Barrett's Oesophagus Foundation (BOF) Aspect - a
chenoprevention trial in Barrett's which stands for Aspirin and
Esomeprazole Chemoprevention trial. This is not directly to do with our

charity but is relevant to Barrett's patients. Gord - is the medical
abbreviation for gastro-oesophageal reflux disease Fort - hmmm not sure

about this one...

Photodynamic therapy is a treatment licenced by National Institute for
Clinical excellence for dysplasia in Barrett's. It involves
administration
of a drug to make you sensitive to light followed by treatment with a
laser
light at endoscopy.

Halo 360 is a new technique using radiofrequency ablation to get rid of

dysplastic Barrett's. This is still a research tool.

Things may change in the future but at the moment these treatments are
only
recommended when patients have significant abnormalities in their
Barrett's
i.e. high grade dysplasia.

Hope that helps.
Best wishes
Dr. Rebecca Fitzgerald
Barrett's researcher, Gastroenterologist and Trustee of BOF
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jazzer
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Quote jazzer Replybullet Posted: 03 Apr 2008 at 10:06am
PROBE is the patient network which developed from the Barretts Oesophagus Foundation. Aspect is a special trial into the use of Asprin, being done by Leicester Univ. GORD stands for Gastro-Oesophageal Reflex Disease, a general term to cover av range of linked conditions.
FORT--I have just found out, stands for 'Fight Oesophageal Reflux Together'. It is led by Oxford Uni and has some big players involved. It started in 2007 and seems well organised. I have no idea why it has been set up as a separate group from BOF/PROBE and it will be confusing to patients, donors, politicians and the public. I have therefore proposed that discussions start for some sort of merger, because precious resources are in danger of being stretched and duplicated.
As for runners and riders, I'll leave others to comment, but the point is that in future all such runners etc should have a common logo, whether it is FORT or PROBE or what.
AS I understand it, marathon entry has been done individually, but others may comment.
I leave others to comment on treatment, but as I understand it, it is still early days with photodynamic therapy and Halo. Current treatment concentrates on PPI & regular endoscopies. However, our conference on 11 April will update people and hopefully comment will appear on this discussion board.
As for medical input, our own people (e.g Dr Rebecca Fitzgerald, Dr Laurence Lovatt, Dr Paul Salmon and others have been very helpful and up to date info should be on the BOF/PROBE website.
Please attend the AGM, and if you can, attend for the earlier sessions. If you can, get involved with our committee.
Best wishes
'Jazzer'
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Quill
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Quote Quill Replybullet Posted: 03 Apr 2008 at 10:15am
Hi Geraint
I too agree that it is confusing. I am also a Barrett's Sufferer, Trustee of BOF and PROBE committee member. My mother died of oesophageal cancer. As you will see from this website BOF has been a registered charity devoted to research and support of the condition for many years. It is striving to 'spread the word' and 'fight the cause'. We have recently merged with another similar minded charity, The McCord Foundation, and are communicating with other related and interested bodies and charities. I understand that FORT is relatively new and your posting was the first I had heard of them. So far as the marathon is concerned individuals have been able to secure entries but this is something that we would like to see developed. The bike ride is being organised by the wife of a former Barrett's sufferer who later died from cancer. The whole of my family intend to do the bike ride and I must get on and try and get sponsorship support for us all. I would strongly recommend that you come to the meeting on 11th April where you should be able to hear more about current research and development plans for BOF and PROBE as well as meeting fellow sufferers with whom you can chew the cud, so to speak. I look forward to meeting you. Take care.
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chrisrob
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Quote chrisrob Replybullet Posted: 03 Apr 2008 at 12:40pm
The only FORT charity I had heard of previously was "Friends of Oncology and Radiotherapy Trust", a cancer charity  in my part of South Hampshire (website: www.fort-charity.org.uk").

I have now found  "Fight Oesophageal Reflux Together" has its own website at: www.refluxhelp.org for anyone like me who wants to find out more about them.

Chris
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Mimi Mccord
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Quote Mimi Mccord Replybullet Posted: 03 Apr 2008 at 4:02pm
Dear Geraint
 
My late husband died from oesophageal cancer, Barrett's remained undiagnosed until he was scoped nine weeks before his death.  I established the McCord Oesophageal Cancer Fund the aims and focus of which was early diagnosis and public awareness.  In January we merged with the Barrett's Oesophagus Foundation.  Probe is the patient support network of BOF and I am about to take over as Chair of Probe.  The McCord charity and BOF had very similar aims hence the merger.  I have never heard of FORT but I can understand your confusion when you discovered a charity that is so similar to ours.
 
As for the runners in the marathon.  There are three and each of them have got their running places individually.  One of them is my daughter Kate McCord.  They are running for BOF/Probe/McCord.  Probe and McCord being arms of BOF.  BOF, I hope in the future will be able to run as a charity in its own right.  There is a waiting list to do this.  The cycle event is being organised by another widow whose husband died from oesophageal cancer.  She is raising money for BOF/Probe.
 
I hope this helps. - Best wishes - Mimi
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Geraint
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Quote Geraint Replybullet Posted: 03 Apr 2008 at 7:55pm
Many thanks to everyone who responded so quickly.
Most of my queries have been answered.
More than one organisation trying to work on the same problem causes confusion and weakens the message to outsiders.
I am pleased this looks like being addressed by "Jazzer".
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Quill
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Quote Quill Replybullet Posted: 04 Apr 2008 at 10:02am
I am pleased to note, Geraint, that you have managed to obtain some answers and I agree that the existence of more than one organisation is as you say. We will be working to address this issue. Will we see you at the AGM?
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