Cardiff CLL meeting and talks, Jan 30th 2013

Cardiff CLL meeting and talks, Jan 30th 2013

CLL SUPPORT ASSOCIATION CARDIFF CLL MEETING

30TH JANUARY 2013

University Hospital of Wales (UHW)

TO RESERVE A PLACE please contact: trustees.pa@cllsupport.org.uk, or telephone the Free phone membership line, 0800 9774396 and leave a message

CLLSA Meeting: 10.30am - 2.30pm cllsupport.org.uk

7th Annual Normal and Malignant

Lymphocyte Meeting: 2.45pm onwards

There has been a good response to the original invite. There are still a few places available. Book now to ensure you gain a place as they are limited and inform us if you have special dietary requirements.

Members meetings allow all affected by CLL to spend time together and share their experiences, giving the opportunity to learn from each other and the expert speakers. This meeting affords the unique opportunity for interaction between the scientific, clinical and patient communities; allowing us all to benefit from this.

The early part of the day concentrates on talks for CLLSA members which conclude at 14.30 allowing people to get on the road. This is then Followed by the scientist’s meeting; The Normal and Malignant Lymphocyte Meeting. This commences with CLL specific scientific talks allowing those interested to stay on.

CLLSA Meeting: 10.30am - 2.30pm

10:30 Arrival and Registration (Tea/Coffee to be served)

10.50 Introduction and Welcome by Nick York, Trustee

11:00 The New CLL clinical Trials. Presentation by Professor Chris Fegan.

University Hospital of Wales

11:30 Q&A Session with Professor Fegan

11:45 Prognostic Markers, Presentation by Dr Chris Pepper,

University Hospital of Wales

12.15 Q&A Session with Dr Pepper and Professor Fegan

12.30 Complimentary Lunch

13.30 ‘In The Blood' Introduction to a Doctoral Project about Living with CLL.

Presentation By Julia Kennedy Senior Lecturer University College Falmouth

14.00 Q&A Session with Julia Kennedy

14.15 Summing up by Nick York

14:30 Close of CLLSA Meeting –

CLL Support Association

Registered Charity No 1113588, cllsupport.org.uk

To reserve a place please contact: trustees.pa@cllsupport.org.uk ,

Telephone the Free phone membership line, 0800 9774396 and leave a message, or write to CLL Support Association, 39-40 Eagle Street, London, WC1R 4TH.

Financial help can be given towards travel and accommodation costs. The allowances are available for both CLL Patients and Carers by submission of an application to the treasurer at: bursary.grant@cllsupport.org.uk or write to the above address. Expenses are paid on receipt of verification of travel and accommodation costs and can be paid at the Meeting . The total available for a CLLSA member and/or their carer is up to £125 per person. To qualify applications need to be received ahead of the meeting.

The scientist's 7th Annual Normal and Malignant Lymphocyte Meeting 2.30pm onwards

2.30 - 2.55 Dr Beth Walsby

“Migration from circulating CLL – not going with the flow?"

2.55 - 3.20 Rosária Alexandre

"Therapeutical targeting of NF-kB in CLL with cell penetrating peptides"

3.20 – 3.45 Sophie Betteridge

"Characterising CD31-CD38 signalling in CLL"

3.45 - 4.10Tea break

4.10 – 4.50Dr Linda Wooldridge

“'The triggers and targets of T-cell leukemic expansions'”

4.50 - 5.40Professor Graham Packham,

University of Southampton

“B-cell receptor signalling in lymphoid malignancies”

Appendix

13.30 ‘In The Blood' Introduction to a Doctoral Project about Living with CLL.

Presentation By Julia Kennedy Senior Lecturer University College Falmouth

Often invisible to the outside world, widely variable in prognostic outcomes, and currently considered incurable, a diagnosis with CLL demands constant negotiation between the concepts of “wellness” and “illness”. From my own diagnosis with the disease in 2011, it became clear that we CLL “patients” occupy a unique position at the crossroads of exciting advances in biomedical approaches to the disease, and communications technologies that allow us to share knowledge and experience.

“In the Blood”, my doctoral project, explores an online support community as a “hub” of knowledge and support exchange. From complex medical research papers to individual accounts of living with the disease (and much in between), the project will document the various stories that come together in the online support community, enabling users to make collaborative sense of a chronic disease that shapes our lives. Apart from identifying the key themes that occupy the lives of those living with (and around) CLL, the project looks at the relationships between research, clinical, and patient perspectives in the dialogues of support communities. How are we translating and utilizing the advanced information at our fingertips? How are we supporting and educating each other? How are we contributing to raising awareness of the disease? What impact is this having on our relationships with our clinicians and carers? Through this approach I aim to show how biomedical research, clinical management, and popular cultural beliefs about what it means to live with cancer translate to everyday experience for those of us living with CLL.

I am really excited to have the opportunity of sharing my work in progress with you in Cardiff in January, and look forward to seeing you all there and hearing some of your own perspectives and experiences. JK

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