rich Castle
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Connect SouthEast event 23rd October

rich Castle
Posted by
26 Oct 2014

An event laid on by LLR where I got to hear the latest news from other patients and health professionals about the charity's advances in research and their plans for the future

I had a fantastic evening and met some amazing people at the Leukaemia & Lymphoma Research connect southeast event held on Thursday 23rd October in London.

I met a fellow patient, Carole Dedman who is now 30 years in remission post acute Leukaemia and has been busy since doing fundraising stuff for the charities branch in Twickenham. I also met Dr Caroline Furness who was one of my doctors on Bud Flanagan ward some 5 years back. She remembered me too. She is now involved in pioneering research into preventing childhood cancers at the institution of cancer research at the Royal Marsden, Sutton. I also met a guy whom I'm going to be working with as a patient rep for clinical trials into drugs for treating acute Myeloid Leukaemia (AML the type I had). He told me about an amazing person who was treated for AML a while back with a stem cell transplant from an anonymous donor. He and a number of others cycled from the uk to the hospital in Germany to meet his donor (for certain reasons both donor and donee are not put in touch with each other for 7 years post transplant). The hospital is where the donor donated his stem cells that saved this mans life. The ride raised well over 10 k for the charity and both donor and donee got to meet for the first time after all these years. Such a touching story. I also got to hear from Bradley Bex who told us of the story of his daughter Casey who was diagnosed whith ALL Leukaemia aged 2 and a half. Casey has been going through treatment and is doing so well. Bradley spoke of the devastation to the family. He also spoke of the research that has been done over the years into Blood cancers which has been helped by charities such as Leukaemia & Lymphoma research and how it is helping many children to beat it and going on to lead wonderful lives. 

It was truly inspirational to meet both patients and researchers at this event and to see how research has progressed over the years into Blood Cancer. It was also interesting to find out from Professor Chris Bunce, the charity's research director, that the drug with which I was treated with (ATRA) was originally used to treat ACNE. 

A big thankyou to those at the charity for putting on this event, in particular Sophie Loveday who invited me to this event. Also special thanks to John Reeve who has given me the opportunity to be a part of a working group as a patient rep for drug trials into Acute Myeloid Leukaemia.

A truly brilliant night.

Rich.

Comments

George smiling, wearing a bow tie and silly hat for New Year 2017/18
27.10.2014

I didn't meet you, Rich, but I was there, too, and echo everything you said about how inspirational it was to bring together researchers, staff, patients and families. Thank you to all involved; I feel more motivated and inspired to use my (fairly protracted) experience of leukaemia (acute lymphoblastic) to help others fighting the illness!

All the best,
George

29.10.2014

Great blog, Rich.

Sounds like you had a good evening and met some fantastic people on the night with some great stories. Really wish I could have been there - unfortunately my body was having none of it!

The guy that your fellow patient rep was talking about is Jonjo Rooney who I think you may have already met at some point. He's fantastic and now has his own website Bpositive which is well worth a look.

It's great that you're on the working group for AML where I know that your input will be invaluable and good luck to the Eagles on Saturday - you deserve a bit of luck after being robbed the ref on Saturday!