Author Topic: London Support Group  (Read 9567 times)

David

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  • Reason for joining: Patient with AL Amy / Kidney involvement
  • Diagnosed: 26.2.2015
London Support Group
« on: September 25, 2015, 06:13:33 PM »
For those living in London and nearby, shall we arrange a meetup? From a purely selfish point of view I would very much like to meet  with others and get the benefit of their experience in terms of what to  expect in the future (near and not so near ....), advice etc etc.

If anybody is interested, maybe post here and we can aim to sort out a date/venue?  Either in central London or alternatively near the Royal Free? I had in mind a date in mid-May sometime? .....

Dear All
Should we aim to meet up in mid-October for a first meeting of the London and South East group? I'd suggest something like Thursday 22nd October at 7pm. Venue TBA but perhaps at/near the Royal Free?
Anybody interested please post here so that I can judge numbers.
Best regards
David 
« Last Edit: September 29, 2015, 01:03:02 PM by Miriam Vered »

Miriam Vered

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Re: London Support Group
« Reply #1 on: September 29, 2015, 01:02:49 PM »
Hi David,


I moved your post here to start a new topic as I thought maybe it will be more visible. I hope you get some responses.

Maybe you should also try writing personally to people who wrote in their posts that they are from the London area and that they may be interested in meeting up?

« Last Edit: September 29, 2015, 01:04:44 PM by Miriam Vered »

David

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  • Reason for joining: Patient with AL Amy / Kidney involvement
  • Diagnosed: 26.2.2015
Re: London Support Group
« Reply #2 on: October 01, 2015, 06:55:22 PM »
Thanks Miriam will do

David

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  • Reason for joining: Patient with AL Amy / Kidney involvement
  • Diagnosed: 26.2.2015
Re: London Support Group
« Reply #3 on: October 08, 2015, 02:49:58 PM »
Dear All / Miriam

I haven't exactly had a flood of replies to my post (!!!) so the first meeting will be postponed to a date to be fixed after the Infoday which is on 20th November. 

I suspect there are still many patients who do not use this forum so I wonder whether it might be possible for the NAC to help out in publicising the Support Groups. That way we could reach pretty much everybody (since all patients attend at the NAC at some stage during their treatment, and usually more than once).

Best regards

David 



 

georgeturner

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  • Reason for joining: Patient Familial ATTR amyloidosis
  • Diagnosed: 13 May 2014
Re: London Support Group
« Reply #4 on: October 08, 2015, 08:25:59 PM »
Hi David,

Sorry you are not getting too many replies to you posts. We started out with just 3 in the Scotland Group, since then another 2 people have met up with us and 2 more are interested. It takes time, and it's not for everybody but we have found it useful to meet up and chat with others who are experiencing similar problems. It's difficult because some people are working or have other commitments or live quite a distance away. We try and arrange a time and place to suit as many as we can.

The flyers for the Group Meetings are now available at the NAC. Perhaps the receptionists or other staff could make patients attending their appointments aware of them and of the forum. Is that possible Miriam?

If you or anyone else attending the Infoday can get some of the flyers and hand them out it would certainly help to publicise the groups. Also ask your local consultants if they would like some copies.

I hope you manage to get your group up and running. I think patients, family, friends and carers will benefit from meeting up.

Good luck.
Slainte Mhath,
George

Gill Penn

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  • Reason for joining: Patient, AL amyloidosis affecting kidneys and heart. Treated with CVD achieving complete response, Relapsed end of 2013 High dose chemo and SCT February 2014. relapse 2015.now on Millenium trial
  • Diagnosed: Nov 11
Re: London Support Group
« Reply #5 on: October 16, 2015, 08:18:23 AM »
David,

Sorry for not replying sooner. I would be interested in a London support group. I am based in Surrey.
I am hopefully on holidays till the end of October but would be available in Nov depending on how I am feeling. I am currently in the millennium trial. This is my third line of treatment in 4 years. There are days of feeling very fatigued which keep me close to home. Had decided not to do the info day this year but have just read that Mark Mcconway is speaking on the patient view so might change my mind.

Couldn't find the other link for replying.

Regards,

Gill Penn

norma

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  • Reason for joining: I was diagnosed with cardiac amyloidosis in June 2010
  • Diagnosed: June 2010
Re: London Support Group
« Reply #6 on: October 19, 2015, 06:36:36 AM »
Hi David, I'm Norma and was diagnosed with cardiac Amy in 2010. I would be interested in joining a london based support group. Regards Norma
Norma

David

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  • Reason for joining: Patient with AL Amy / Kidney involvement
  • Diagnosed: 26.2.2015
Re: London Support Group - FIRST MEETING NOW FIXED
« Reply #7 on: November 25, 2015, 10:57:36 AM »
Dear All

I am pleased to say that the London Support Group will be holding its first meeting on Friday 11th December at 4pm at the NAC, Royal Free Hospital. The NAC has kindly agreed to supply a room (many thanks to Professor Hawkins and the Staff there). The meeting will finish by 6pm when the NAC closes.

So that I can have an idea of numbers, please would anybody planning to attend email me: davidgoldstone@btinternet.com

Best wishes

David



David

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  • Diagnosed: 26.2.2015
Re: London Support Group - date and venue for next meeting
« Reply #8 on: January 04, 2016, 02:58:14 PM »
Dear All

The London Support Group had a very interesting first meeting on Friday 11th December.

I am pleased to say that we will be holding our second meeting between 5 and 6.30 pm on Tuesday 22nd March at the Garden Gate Pub, 14 South End Rd, London NW3 2QE (outside if fine weather!). The pub is a couple of minutes walk  down the hill from the Royal Free Hospital and only a minute away from Hampstead Heath main line station (or about ten minutes walk from Belsize Park/Hampstead tube stations). There is street pay-parking nearby.

If you are planning on attending, please drop me a line either by personal message on this forum or by email to davidgoldstone@btinternet.com so that I may have an idea of numbers.

Best regards

David 

David

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  • Reason for joining: Patient with AL Amy / Kidney involvement
  • Diagnosed: 26.2.2015
Re: London Support Group
« Reply #9 on: June 01, 2016, 07:05:12 PM »
Dear All

I attach details of the next meeting of the London Support Group.

Best wishes

David 

David

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  • Reason for joining: Patient with AL Amy / Kidney involvement
  • Diagnosed: 26.2.2015
Re: London Support Group
« Reply #10 on: September 15, 2016, 07:08:02 PM »
Just a quick  reminder  that we ( The London support group) are meeting on Thursday 22nd of September at 5 PM at the NAC meeting room.  All very welcome but a quick email or message to me to let me know you are coming be much appreciated. ( davidgoldstone@btinternet.com).  Our guest speaker is Dr Wechalekar  so this is a great opportunity to  put questions and hear about the latest developments in the field.


David

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  • Reason for joining: Patient with AL Amy / Kidney involvement
  • Diagnosed: 26.2.2015
Re: London Support Group
« Reply #11 on: February 20, 2017, 12:20:08 PM »
Dear Patient / Carer

The London Amyloidosis Support Group will be holding its next (fourth) get-together on Thursday 9th March at 5pm.

We will meet at the Garden Gate Pub. Go down to the bottom of Pond Street and turn left. The pub is across the road on the other side of the zebra crossing.  As you come into the pub we will be at the right hand far end. Any problems, just ring me on my mobile (07986 866570).

The meeting is a chance to share news, information and experiences with other members of our select band. Newly diagnosed patients and their families are particularly welcome.

If you are planning on attending, please drop me a line either by personal message on the NAC forum at http://amyloidosis.org.uk/forum or by personal email to davidgoldstone@btinternet.com

I look forward to seeing you there.

Best regards

David

David

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  • Reason for joining: Patient with AL Amy / Kidney involvement
  • Diagnosed: 26.2.2015
Re: London Support Group - next meeting 28th September 2017
« Reply #12 on: September 11, 2017, 02:34:41 PM »
Dear All

I attach details of our next meeting which will be at the NAC: 5pm on 28th September 2017.

If you are planning on attending, could you send a short email to John Butler (jwbutler@btopenworld.com) with copy to me (davidgoldstone@btinternet.com)

Thanks and best wishes

David 

sandra.quinn

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Re: London Support Group
« Reply #13 on: October 07, 2019, 10:31:41 AM »
Dear all,

I was wondering whether there was anyone in the London Support Group (a carer/family member) who would like to be an author for the next edition of AL amyloidosis Matters. I would really appreciate hearing from carers who are interested in contributing.

To get in touch email me at sandra.quinn@myeloma.org.uk

best wishes,

Sandra Quinn

Daffydak

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  • Reason for joining: Recently diagnosed with AML Al
  • Diagnosed: 19/06/2019
Re: London Support Group
« Reply #14 on: October 24, 2019, 11:43:46 AM »
Good morming everyone I am David Kramer daignosed with Amyloid back in June 2019 now halfway through my chemo.

I am interested in supporting group at the moment not driving so have to rely on my wife.

I am being treated at UCL and pleased with progress.

Would like to join in in dialogue with everyone.

I am 73 and prior to the year before I was diagnosed I was healthy and playing tennis and going to the gym. \i am a far cry from that at the moment but have been encoraged by a lot of the progress it would seem other people are having.

On my the renewal of my car insurance is this something I have to declare.

Any one have any ideas.