Help with speech for charity event

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Karen

Help with speech for charity event

Post by Karen » 30 Nov 2011 16:55

Hello all

I'm attending a social event this weekend, during which there will be a raffle to raise money for charity. As the organisation holding the event is one that my father has been involved with for many years, the organisers want to nominate an MDS related charity to receive the money raised (they pick a different charity each each year).

My first question is whether there is a charity group dedicated to MDS, clinical research and patient support?

Secondly do any of you have any information about MDS that can be used in a fund raising environment? I am going to talk a little about the effect that my father's condition has had on the family, but any suggestions from those of you that have done this before would be greatly appreciated.

Thank you in advance

Karen
janetstanford
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Re: Help with speech for charity event

Post by janetstanford » 30 Nov 2011 17:36

Hi Karen
I would contact Sophie she would know and i am sure she would also be able to get the info you need quickly
also i hope you raise lots for cash for as we all know a very worthwhile cause
hope your dad is well and has a great evening :) Janet

p.s where is it as other members of the forum may attend also you could advertise on the forums face book page that may help :)
Karen

Re: Help with speech for charity event

Post by Karen » 01 Dec 2011 12:24

Hello Janet

Thanks for your reply. I hope that you're keeping well.

The event is an an annual Irish county social get together, and every year they have a raffle and donate the proceeds to a worthy cause. The organising committee have decided that this year they want to support an MDS charity.

The event is tomorrow night, and it's ticket only in a smallish venue, so I probably won't advertise it. However, I think that it's a good suggestion for any future fund raising events.

I'll contact Sophie - thanks for the suggestion.

Karen x
chris
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Re: Help with speech for charity event

Post by chris » 01 Dec 2011 22:54

Hi Karen

Obviously, it would be good to donate to MDS UK Patient Support Group (!) and you can click on the Fundraising tab on this site for details. I am doing a similar thing as the Choral Society I sing with has kindly said it would donate the collection after our carol concert in a couple of weeks' time and I am to speak about the appeal. 4 minutes on why people should donate to MDS UK. Ideas anybody??!!

I won't have time to go into all the different issues that people have but the main things I wanted to stress was the rareness of the disease, the consequent isolation after diagnosis, the fears about possible progression to leukaemia and the everyday quality of life issues. I wanted to emphasise MDS UK's active role in lobbying for Azacitidine resulting in the current availability,too. And say how it provides free meetings all over the Uk so that MDS patients and their families can meet and share experiences. I think that's already 4 minutes!!

Sophie has already sent me lots of useful info so I'd suggest you e-mail her for ideas.

Hope it goes OK and that you have a lovely evening.

Best wishes

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
chris
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Re: Help with speech for charity event

Post by chris » 06 Dec 2011 12:02

Hi Karen

My event is coming up on Saturday! What did you say?!!
And how was it received?

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
chris
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Location: Essex
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Re: Help with speech for charity event

Post by chris » 17 Jan 2012 11:33

Hi all

Just to let you know that I did the 4 minute appeal and it raised £360 - now safely in the MDS Patient Support coffers to be used for hosting patient forums etc. !! Well worth my nerves!

If anybody is doing anything similar I'd be happy to share what I said. Just let me know and I'll attach it.

best wishes

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
Jayne
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Re: Help with speech for charity event

Post by Jayne » 17 Jan 2012 15:50

Chris

That is fantastic! Well done you.

My son and my nephew are doing a skydive at the end of April!!! They hope to raise lots of money and are going to donate to Anthony Nolan, Leukaemia and Lymphoma Research and MDS UK Patient Support!

It was my sons idea, it makes me very proud of him.

Jayne
Jayne
Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.
chris
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Re: Help with speech for charity event

Post by chris » 17 Jan 2012 17:06

Hi Jayne

Aaah! That is so sweet of them - mind you, I bet you are a bit worried!!! Sponsored knitting would be safer but not nearly as macho! Hope it raises a lot as all are very deserving causes.

I feel so grateful to this Forum and the MDS Patient Support Group for helping me get my head straight so I think I owe it to them to keep it all going!

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
Karen

Re: Help with speech for charity event

Post by Karen » 20 Feb 2012 10:47

chris wrote:Hi Karen

My event is coming up on Saturday! What did you say?!!
And how was it received?

Chris
Glad to hear that your event sent so well! Were you very nervous?

We managed to raise £1500 - I was overwhelmed by how generous people were. At lot of the people in the room know Dad, and I expect that was the reason.

Apparently someone who was in attendance recorded my speech. I've asked them for a copy so that I can share it, and because I'm curious as to how I came across, as it's all a bit of a blur for me.

As well as the money, it's good to get awareness of MDS raised, and I threw in an appeal for blood and bone marrow donors whilst I was at it! :-)

Karen x
chris
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Re: Help with speech for charity event

Post by chris » 20 Feb 2012 15:33

Dear Karen

Wow! Well done! What an amazing amount of money. I was a little nervous - especially as the church is very big and crowded so I was asked to use a microphone so had to endure my voice coming back at me!!! Aaargghh! I presume Sophie has all the details about your event so she can post it on the website? I will include it an issue of the newsletter so people can see what great work is being done by MDS patients and their relatives.

Great minds think alike! I also put in a general appeal for blood and stem cell donors (including cord blood) and was very gratified that a (very!) pregnant lady came up to me afterwards and said she was going to ask about this at the maternity hospital and tell all her pregnant friends too!!

In fact, I told people that they could do a simple saliva test thru' the Antony Nolan Trust and at the end I mentioned the collecting buckets and said I was asking them for their money, their blood and their spit... but please to put only money in the buckets!!! I think that made everybody laugh!!!

Well done again and thanks for sharing your experience.

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
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