About the CLL Support Association

Introduction
Chronic Lymphocytic Leukaemia Support Association (CLLSA) is an exciting new charity (Registration No.1113588) formed in August 2005 by a group of four CLL patients (Robert Cork, Chonette Taylor, Howard Pearce and Sue Waldie) who initially made contact over the internet. The main aim of CLLSA is to provide help and support for patients with CLL (and similar related conditions) and their carers.

Despite the vast amount of information that is available on the web it was felt that much of the information is either wrong or out of date or not in a user friendly form. Also a lot of information is American orientated which may not be relevant to patients in the UK. The aim of CLLSA is to provide accurate and patient friendly information which will be useful to UK patients. There are many excellent Leukaemia and cancer support charities but nothing which addresses the unique challenges of a CLL patient. CLLSA will not try to duplicate the work of others but will try to fill in the gaps and provide guidance on where to turn for help and assistance.

CLLSA is a wholly independent UK organisation which is patient oriented and run by unpaid volunteers who know from experience what help is needed. We also believe that there is often a complete absence of support literature in hospitals and GP surgeries on CLL and for those without access to the internet, and we intend to fill that gap.

The objects of the charity are:

• To relieve sickness and to preserve and protect health by providing support to Chronic Lymphocytic Leukaemia (CLL) patients and their carers (CLL to include similar related conditions e.g. PLL etc).
• To advance public education in CLL related matters primarily in the UK  through publications and the internet.
• To promote and support scientific research into the treatment and care of CLL patients.

Initially we aim to provide:

• A contact list of Consultants in the UK who specialize in CLL.
• A comprehensive list of useful websites and sources of information on CLL.
• Latest news and developments in CLL.
• Regular patient meetings.

Longer term we are looking to provide:

• Information leaflets.
• Regular newsletters.
• Patient conferences with expert speakers on CLL.
• Fundraising for CLL research.

We also hope to be able to work with the UK CLL medical profession in order to advance the knowledge and treatment of CLL.

Medical Advisors to CLLSA
We are fortunate to have three of the leading UK Experts on CLL as Medical Advisers to the Association:

Professor D Catovsky (DSc(Med) FRCPath FRCP FMedSci)

Professor Catovsky was awarded the 2005 International World CLL Binet-Rai medal for outstanding contributions to CLL research.

Professor T Hamblin (DM, FRCP, FRCPath, FMedSci)

Professor Hamblin won the 2003 Binet-Rai medal.

Professor Andrew Pettitt (MA, PhD, MRCP, MRCPath)

Professor Pettitt is Reader and Consultant Haematologist at the Royal Liverpool University Hospital.  He is currently Chairman of the UK CLL Forum which is a group of leading clinicians and researchers in the UK working on CLL.

Donations

We are looking for donations to help us meet our goals. We have kept our aim to be a ‘free to join association’ open to all with an interest in CLL. We are able to provide support, membership meetings and a selection of leaflets on a free basis.

 Our Treasurer, Andrea Cockburn writes; (July 2011)

‘As treasurer on behalf of the Trustees I would like to thank everyone who has made a donation in any form to the CLLSA and listed below are the various types of donation that we have received:-

• Monthly or yearly donations by standing order (this is a great help as we know just how much money we can regularly rely on)

• Donations made through any form of fund raising

• Irregular donations made either by post or at patient meetings

• Donations made through Just Giving

• Finally, donations made in memory of a loved one or friend

I do hope that I have covered all of the various types of donations and please be assured that each and every one is gratefully received, as this enables us to keep up the good work on your behalf.’

Andrea Cockburn

Donations can be made in a number of ways, for more information please go to donations.  As CLLSA is a registered charity, if you are a UK taxpayer, all donations to CLLSA, whether  'one-off ' or regular donations, qualify for full tax relief.  In addition by completing a 'Gift Aid' form CLLSA is able to reclaim from the Inland Revenue 28p tax for each  £1 donated.  A template Gift Aid form is available at: http://www.hmrc.gov.uk/charities/appendix_b1.htm.  Just complete the form and email or post it to us.

In 2011 we also have support  grants from Roche Pharmaceuticals and from Glaxo Smith Kline UK. We are grateful to both of these organisations for their generous and unstinting support over the last years. Without these grants, CLLSA would not be able to do as much as we do for all of us, the members.

Trustees

The  trustees of the charity are:

Andrea Cockburn (Treasurer)

Chonette Taylor (Membership Secretary)

Nick York 

Disclaimer

The content of this website is for information only. It is not intended to be a substitute for professional medical care and we would always advise you to check with your doctor if you have any concerns about your condition or treatment.   We make every effort to ensure that the content of the site is accurate and up to date, but we accept no liability in relation to typographical errors or third-party information.   Although we attempt to link only to appropriate organisations, we cannot accept responsibility for the content of any external website.