Author Topic: Amyloidosis Infoday, Nov 20th Infoday  (Read 9219 times)

patpinchin

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Amyloidosis Infoday, Nov 20th Infoday
« on: October 10, 2015, 01:33:37 pm »
AL amyloidosis Infoday (London)
Friday 20 November 2015
Park Crescent Conference Centre : 9:30 am - 4:30 pm

https://www.myeloma.org.uk/events/event/al-amyloidosis-infoday-london-2/

Those of you who like me are unable to attend these events but who greatly appreciated the televised presentations of Professor Hawkins and his team at the 2014 Infoday, will be disappointed to learn that MUK have no plans to televise this year's proceedings. They will post the slides from the day on their website. I find these are of limited value without the commentary. I intend to write to MUK this week to ask them if they would consider changing their plans because so many sufferers and family members in the UK and overseas really found the televised event so helpful and informative. If you would like me to add your name to my letter please post your wish in reply to this post. I would like to be able to add as many names as possible as I feel it would strengthen our case and be more persuasive.
Moreover we shall miss the chance to see our fellow sufferer and forum member Mark McConway present his patient experience. Mark has already earned a reputation as an excellent speaker for  Amyloidosis to a group of medical professionals in Scotland. I am sure his Infoday talk will be as interesting and well informed as his recent feature in NAC newsletter 6. His characteristic engaging and witty style will, I think, be very well received.  I for one would really like to watch it.
. Please do post a brief message allowing me to add your name to my letter.  Thank-you :)
« Last Edit: October 10, 2015, 06:10:43 pm by patpinchin »
Pat

ziad_okeil

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Re: Amyloidosis Infoday, Nov 20th Infoday
« Reply #1 on: October 10, 2015, 06:15:47 pm »
Thanks a lot dear Pat for this initiative. Very thoughtful of you. Please add my name.
Regards
Ziad
Ziad

georgeturner

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Re: Amyloidosis Infoday, Nov 20th Infoday
« Reply #2 on: October 10, 2015, 11:21:29 pm »
It's great that MUK host the AL Amyloidosis Infodays and give us the opportunity to hear about the latest developments from the NAC team.
The past recordings have meant those unable to attend, can still get to see and hear the proceedings. While it will be good to have access to the slides, it will not be the same as watching a recording. I hope MUK can be persuaded to change their mind.
Having enjoyed Mark's article in the NAC newsletter, and having had the pleasure of meeting him at the Scotland Support Group meetings, I am sure that he will present his Patient Experience in a way that will be appreciated by all.
It will be a pity if the chance to record the Infoday for http://www.myelomatv.org.uk/ is missed.
Please add my name to your letter.
Slainte Mhath,
George

rose1946

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Re: Amyloidosis Infoday, Nov 20th Infoday
« Reply #3 on: October 11, 2015, 05:48:42 pm »
Thank you Pat.  Please add my name to your letter.  I was diagnosed in November 2014 and found the televised event extremely helpful. 
Many thanks and best wishes.
Rosemary

Miriam Vered

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Re: Amyloidosis Infoday, Nov 20th Infoday
« Reply #4 on: October 12, 2015, 10:42:41 am »
Hi All,


I've mentioned this to Judy DeWinter, the Chairman of MUK and she said she'll "sort this out".
I'll let you know when I hear any more.

johncoaster

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Re: Amyloidosis Infoday, Nov 20th Infoday
« Reply #5 on: October 12, 2015, 11:00:24 am »
ime in pat

patpinchin

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Re: Amyloidosis Infoday, Nov 20th Infoday
« Reply #6 on: October 12, 2015, 11:07:37 am »
Hi Miriam,

Very many thanks for this. My letter was to be addressed to Eric Lowe, Director of MUK and Judy. I know Judy is a member of UKAAG and is very active in promoting Amyloidosis. 

I have been delighted to receive 67 positive replies to my draft letter which I sent out to all my contacts here and overseas yesterday. Some have not yet responded. Things have moved very quickly.

I included Isabelle Lousada, Chairman of the US Amyloidosis Foundation. We have exchanged correspondence previously. As you will probably know, Isabelle works closely with MUK and contacted them herself yesterday as a result of my appeal endorsed by so many. I am delighted to report back
that MUK are working on the matter and that the key proceedings of the 2015 AL Amyloidosis Infoday WILL be recorded. I am sure everyone will be equally delighted as last year's event was massively appreciated by all who attended and by those of us who viewed it through the MUK website.

Consequently I shall not now be sending the letter. A sincere THANK-YOU to all who contacted me so promptly and with such positive comments.  :) :) :)
« Last Edit: October 12, 2015, 11:11:25 am by patpinchin »
Pat

Miriam Vered

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Re: Amyloidosis Infoday, Nov 20th Infoday
« Reply #7 on: October 12, 2015, 11:10:44 am »
Well done Pat!

georgeturner

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Re: Amyloidosis Infoday, Nov 20th Infoday
« Reply #8 on: October 12, 2015, 11:21:33 am »
Excellent news. Great work and many thanks to you Pat.
Slainte Mhath,
George

Lesley

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Re: Amyloidosis Infoday, Nov 20th Infoday
« Reply #9 on: October 12, 2015, 12:10:01 pm »
Pat what excellent news. You are really wonderful for acting on this so quickly and getting such good responses.
Well done you.
Brilliant news
xx

patpinchin

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Re: Amyloidosis Infoday, Nov 20th Infoday
« Reply #10 on: October 20, 2015, 06:55:45 pm »
Excellent news received today from MUK.  :)

 I’m very pleased to say that not only has MUK already confirmed that the Amyloidosis Infoday on Nov 20th 2015 will be tele recorded but ALSO that there are plans to either film or live-stream future AL amyloidosis Infodays.

Naturally I have thanked Sue and her Infoday team at MUK for understanding the exceptional needs of amyloidosis as a rare disease. Tele recording must require generous funding by the charity.

I am sure you will all be as thrilled as I am by this news. A big thank-you to MUK and to all who supported me.  :)
« Last Edit: October 21, 2015, 10:08:51 am by patpinchin »
Pat

Mhelenx

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Re: Amyloidosis Infoday, Nov 20th Infoday
« Reply #11 on: October 21, 2015, 12:26:03 am »
Great news Pat, with your determination and the support of others, this will benefit the many who cannot attend the Infoday.
MhelenX✨