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WMUK Newsletter - Autumn 2019 Issue 

The Autumn 2019 issue of the WMUK Newsletter is now available.

We have lots of news to share on all the latest developments in WM and WMUK, please click HERE to download your copy.

The latest edition contains news about support group meetings taking place this Autumn, and has a report on the Patient-Doctor Summit in July 2019. You can also read about new clinical trials for WM; the latest work of the Rory Morrison WM Registry; and some of the amazing fundraising activities that WMUK’s supporters have taken on this year. 

The Newsletter is also available via our Facebook page.

If you would prefer to receive future editions of our newsletter in the post, please email or phone us so that we can update your information.

Let us know what you would like to read about in future editions...

 


BREAKING NEWS

Surrey, Hampshire, Sussex, Dorset and Wiltshire

 

WM Support Group Meet-Up

When: Saturday 23 November 2019

Where: Badger Farm & Oliver’s Battery Residents’ Community Association

Badger Farm Community Centre
Badger Farm Road
Winchester, SO22 4QB

T: 01962 868630

Our fellow patient Bob Perry who runs the Bournemouth and District WM Support Group (BAD WMers) has decided to take his Support Group on the road to make it more accessible to other patients outside of Dorset. This is as a result of the interest expressed at the National summit in London recently. He has booked a Community Centre at Badger Farm, South West of Winchester and very close to the M3 motorway. The Group will meet from about 1pm -4pm on Sunday 24th November and will have a few speakers. He hopes that this will attract those patients and partners who live in the Surrey, Hampshire, Sussex, Dorset and Wiltshire areas. Bob will put more details out nearer the date but would initially appreciate an expression of interest so that he can consider numbers etc. Bob is in France from 24th Aug-14th October but please let him know on bob5773@hotmail.co.uk if you are likely to attend. 

 

 

 

 

WMUK APPOINTS RUPINDER BANCIL AS AN ADMINISTRATION OFFICER

WMUK APPOINTS RUPINDER BANCIL AS AN ADMINISTRATION OFFICER

12-Oct-2018
Rupinder has become part of the WM family in the capacity of an Administrator to deal with day-to-day tasks of the charity and to support the Trustees in their work.

WMUK WELCOMES ERIC LOW AS AN INVALUABLE ADDITION TO OUR BOARD OF TRUSTEES

WMUK WELCOMES ERIC LOW AS AN INVALUABLE ADDITION TO OUR BOARD OF TRUSTEES

12-Oct-2018
Eric Low, former Chief Executuve and founder of Myeloma UK, has joined WMUK Board of Trustees. Eric brings with him invaluable knowledge and experience to carry forward the vision of WMUK.

DEPARTMENT OF HEALTH, NORTHERN IRELAND ANNOUNCES EASIER ACCESS TO TREATMENT FOR CANCER PATIENTS

DEPARTMENT OF HEALTH, NORTHERN IRELAND ANNOUNCES EASIER ACCESS TO TREATMENT FOR CANCER PATIENTS

11-Oct-2018
Department of Health, Northern Ireland issued a press release outlining plans for 'Improved Access to New Drugs' to cancer patients in Northern Ireland and announced plans to introduce changes to ensure that all patients have the same access to cancer drugs and treatment options as the rest of the UK.

 

 

Latest Events

LONDON: WMUK Health Walk

When: Friday 18 October 2019 - Time: 14.00 | Where: Maggie's Bart, London EC1A 7BE

You are invited to join other WMers for a social event at 14.00 on Friday, 18th October 2019 at Maggie’s Barts, London EC1A 7BE.

The afternoon starts with a health walk with an opportunity to meet fellow WMers while taking in some of the fascinating history of the city of London. The walk will be led by a City Guide and volunteers from ‘Walking for Health’ and the Maggie’s centre.

After the walk, one of the Maggie’s staff will give a short welcome and introduction to the centre. Representatives from WMUK will also be there to talk about the work of the charity, and there will be time to mix and mingle.

We are limited to around 30 places for this event which has been organised especially for WMers. Places will be allocated on a first-come basis.

To register your interest, or for more information, please contact the WMUK office by email: info@wmuk.org.uk or phone: 020 3096 7858.



The location details and directions to the centre can be found via this link :

https://www.maggiescentres.org/our-centres/maggies-barts/

SURREY, HAMPSHIRE, SUSSEX, DORSET & WILTSHIRE: WM Support Group

When: Saturday 23 November 2019 - Time: 13.00 to 16.00 | Where: Badger Farm & Oliver’s Battery Residents’ Community Association Badger Farm Community Centre Badger Farm Road Winchester, SO22 4QB

WM patient Bob Perry who runs the Bournemouth and District WM Support Group (BAD WMers) has decided to take his Support Group on the road to make it more accessible to other patients outside of Dorset. This is as a result of the interest expressed at the national Summit in London recently. He has booked a Community Centre at Badger Farm, South West of Winchester and very close to the M3 motorway. The Group will meet from about 1pm -4pm on Saturday 23 November and will have a few speakers. He hopes that this will attract those patients and partners who live in the Surrey, Hampshire, Sussex, Dorset and Wiltshire areas. Bob will put more details out nearer the date but would initially appreciate an expression of interest so that he can consider numbers. Bob is in France from 24th Aug-14th October but please let him know on bob5773@hotmail.co.uk if you are likely to attend.

WMUK PATIENT - DOCTOR SUMMIT 2019 - BOOK YOUR PLACE NOW!!

When: Saturday 6th July 2019 | Where: The King’s Fund, Cavendish Square, London W1G 0PG

WMUK's much awaited annual event bringing WM community together including patients, carers and clinicians for an informative and interactive day.


Surrey, Hampshire, Sussex, Dorset and Wiltshire

WM Support Group Meet-Up

When: Saturday 23 November 2019

Where:

Badger Farm & Oliver’s Battery Residents’ Community Association

Badger Farm Community Centre
Badger Farm Road
Winchester, SO22 4QB

T: 01962 868630


To book your place, please email Bob Perry on bob5773@hotmail.co.uk
 

 

 

 

LONDON: WMUK Health Walk

When: Friday 18 October 2019 - Time: 14.00 | Where: Maggie's Bart, London EC1A 7BE

You are invited to join other WMers for a social event at 14.00 on Friday, 18th October 2019 at Maggie’s Barts, London EC1A 7BE.

The afternoon starts with a health walk with an opportunity to meet fellow WMers while taking in some of the fascinating history of the city of London. The walk will be led by a City Guide and volunteers from ‘Walking for Health’ and the Maggie’s centre.

After the walk, one of the Maggie’s staff will give a short welcome and introduction to the centre. Representatives from WMUK will also be there to talk about the work of the charity, and there will be time to mix and mingle.

We are limited to around 30 places for this event which has been organised especially for WMers. Places will be allocated on a first-come basis.

To register your interest, or for more information, please contact the WMUK office by email: info@wmuk.org.uk or phone: 020 3096 7858.



The location details and directions to the centre can be found via this link :

https://www.maggiescentres.org/our-centres/maggies-barts/

SURREY, HAMPSHIRE, SUSSEX, DORSET & WILTSHIRE: WM Support Group

When: Saturday 23 November 2019 - Time: 13.00 to 16.00 | Where: Badger Farm & Oliver’s Battery Residents’ Community Association Badger Farm Community Centre Badger Farm Road Winchester, SO22 4QB

WM patient Bob Perry who runs the Bournemouth and District WM Support Group (BAD WMers) has decided to take his Support Group on the road to make it more accessible to other patients outside of Dorset. This is as a result of the interest expressed at the national Summit in London recently. He has booked a Community Centre at Badger Farm, South West of Winchester and very close to the M3 motorway. The Group will meet from about 1pm -4pm on Saturday 23 November and will have a few speakers. He hopes that this will attract those patients and partners who live in the Surrey, Hampshire, Sussex, Dorset and Wiltshire areas. Bob will put more details out nearer the date but would initially appreciate an expression of interest so that he can consider numbers. Bob is in France from 24th Aug-14th October but please let him know on bob5773@hotmail.co.uk if you are likely to attend.

WMUK PATIENT - DOCTOR SUMMIT 2019 - BOOK YOUR PLACE NOW!!

When: Saturday 6th July 2019 | Where: The King’s Fund, Cavendish Square, London W1G 0PG

WMUK's much awaited annual event bringing WM community together including patients, carers and clinicians for an informative and interactive day.


Surrey, Hampshire, Sussex, Dorset and Wiltshire

WM Support Group Meet-Up

When: Saturday 23 November 2019

Where:

Badger Farm & Oliver’s Battery Residents’ Community Association

Badger Farm Community Centre
Badger Farm Road
Winchester, SO22 4QB

T: 01962 868630


To book your place, please email Bob Perry on bob5773@hotmail.co.uk
 

 

 

 

Latest Media

November 2016 e-newsletter

November 2016 e-newsletter

21-Nov-2016
Download the latest newsletter about trials, transplants London Marathon and more!

WM Clinical News

WM Clinical News

01-Jan-2016
Designed for doctors, nurses, pharmacists and researchers. Contains news of the clinical day on the 16th March at the Royal Free. You can book on-line by going to 'buy items and book events' on the home page.
In Word Format. Please distribute to any other interested clinicians.

VIDEO:Neuropathy in WM Dr Mike Lunn

VIDEO:Neuropathy in WM Dr Mike Lunn

19-Nov-2015
Dr Michael Lunn, one of the leading specialists in treating neuropathies associated with WM at Queens Square, UCLH, outlines their causes and treatment at IWWM8, London 2014. A very through introduction.

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News and Event - Events
 

 

DEPARTMENT OF HEALTH, NORTHERN IRELAND ANNOUNCES EASIER ACCESS TO TREATMENT FOR CANCER PATIENTS

DEPARTMENT OF HEALTH, NORTHERN IRELAND ANNOUNCES EASIER ACCESS TO TREATMENT FOR CANCER PATIENTS

11-Oct-2018
Department of Health, Northern Ireland issued a press release outlining plans for 'Improved Access to New Drugs' to cancer patients in Northern Ireland and announced plans to introduce changes to ensure that all patients have the same access to cancer drugs and treatment options as the rest of the UK.

Ibrutinib finally approved for WM

Ibrutinib finally approved for WM

28-Sep-2017
Ibrutinib, the BTK inhibitor marketed by Janssen has been approved (subject to a 15 day appeal period) for Waldenstrom patients by NICE to enter the Cancer Drugs Fund to treat relapsed patients and those not suitable for chemo-immunotherapy. Read our 28th September press release below! The roll out of the Rory Morrison Registry Project can now take place nationwide, and your support will be vital to expand the number of data collection hospital centres.

WMUK helps make Blood Cancer Visible

WMUK helps make Blood Cancer Visible

14-Sep-2017
8 WMUK volunteers- with our Patron Charlotte Green leading the event- volunteered to be part of the MBCV in September at Paternoster Square, next to St.Paul's Cathedral. This consisted of 104 installations representing the first names and heights of the number of people diagnosed each day with blood cancer, created by artist Paul Cocksedge. Each installation had the patient's story. Watch the video! Pictures below!

Seb's Video Tale- newly diagnosed

Seb's Video Tale- newly diagnosed

07-Jul-2017
Seb's inspirational talk about being diagnosed is compulsive viewing for the younger diagnosed patient.

WMUK Guide to WM updated

WMUK Guide to WM updated

01-May-2017
WMUK's popular guide to WM, authored by WMUK Trustee Dr Shirley D'Sa of UCLH has been updated and can be viewed/downloaded as a PDF.

WMUK joins in letter to PM on healthcare rationing

WMUK joins in letter to PM on healthcare rationing

19-Feb-2017
WMUK, a member of the Specialised Healthcare Alliance, has signed a letter to Theresa May calling for fair treatment for patients with rare and complex conditions. The Observer and Guardian carried the story on Sunday 19th February.

Transplants in WM reinstated!

Transplants in WM reinstated!

04-Dec-2016
NHS England announced today that stem cell transplants in WM would be funded, ending months of speculation when the proposed policy was held back in August pending the court decision on PrEP. Thanks go to all our community, supporters and members of fellow blood cancer charities in raising the issues of proper treatment for this disease, particularly in signing a 12,000+ strong petition in Parliament.
Particular thanks to Harriet (pictured) and Sandra who stood up and were counted,driving the campaign. Both have now had their transplants and are back home recovering.

Ibrutinib approved for CLL- can WM be far behind?

Ibrutinib approved for CLL- can WM be far behind?

25-Nov-2016
NICE has announced that Ibrutinib (Imbruvica® ) is to be approved for use in relapsed Chronic Lymphocytic Leukaemia. This removes it from the Cancer Drugs fund into routine commissioning. Ibrutinib in relapsed WM and Mantle Cell Leukaemia both await NICE decisions. In relapsed WM (and those not suitable for conventional chemo-immunotherapy), Janssen have applied to put the drug into the new Cancer Drugs Fund.
You can download the Janssen press release which mentions WM.

Make Blood Cancer Visible (MBCV) - 2018 Campaign

Make Blood Cancer Visible (MBCV) - 2018 Campaign

03-Oct-2018
JOURNEY OF THE MBCV 2018 ROADSHOW

Heroic School Bake for Waldenstrom Research

Heroic School Bake for Waldenstrom Research

19-Jul-2017
8 Year 4 pupils at Holy Cross Primary Academy, Hucknall, took on a cake baking challenge for their fete to raise money for Waldenstrom Research, as they were so concerned when one of their relatives was diagnosed with WM

Village Quiz raises £7,000 for WMUK

Village Quiz raises £7,000 for WMUK

30-Dec-2015
The Peire family aided by their friends at High5 Events raised a fantastic £7,000 in their village hall quiz at Barton-Le-Clay, Bedfordshire

WMUK & Blood Cancers Alliance lobby health minister

WMUK & Blood Cancers Alliance lobby health minister

04-Nov-2015
WMUK joined the Blood Cancers Alliance to fight for better treatment for blood cancer patients. Read the Alliance open letter to Rt. Hon. Jeremy Hunt MP, Secretary of State for Health- then sign the petition and tell your friends!

Laugh4Rory Now tops £8K!

Laugh4Rory Now tops £8K!

01-May-2015
Rory's BBC Radio colleagues Susan Calman, Jeremy Hardy Isy Suttie, Elis James,Andy Hamilton and John Finnemore raised over £8,000 for the Rory Morrison Cinical Registry at RADA

Run4Rory- £4000+ raised for the WM Registry

Run4Rory- £4000+ raised for the WM Registry

03-Aug-2014
Rosie Durham ran in the Womens' Running 10k race in Bristol on 2nd August and has raised over £4000 to date for the Rory Morrison Clinical Registry. See the WMUK page at https://www.justgiving.com/wmuk for more ideas about sponsored events.

Newsletter Number 3, March 2014 available now!

Newsletter Number 3, March 2014 available now!

15-Mar-2014
Download or read the new newsletter

New Guide to WM published by WMUK

New Guide to WM published by WMUK

25-Mar-2014
This new guide is written for WMUK by Dr Shirley D'Sa of University College Hospital London

THREE INTERESTING DANA FARBER ARTICLES ON WM TREATMENT

THREE INTERESTING DANA FARBER ARTICLES ON WM TREATMENT

18-Dec-2011

TRIAL SHOWS RITUXIMAB SUPERIOR TO WATCH AND WAIT

TRIAL SHOWS RITUXIMAB SUPERIOR TO WATCH AND WAIT

01-May-2012

WMUK APPOINTS RUPINDER BANCIL AS AN ADMINISTRATION OFFICER

WMUK APPOINTS RUPINDER BANCIL AS AN ADMINISTRATION OFFICER

12-Oct-2018
Rupinder has become part of the WM family in the capacity of an Administrator to deal with day-to-day tasks of the charity and to support the Trustees in their work.

WMUK APPOINTS SANDRA INGRAM AS A TRUSTEE AND CHARITY TREASURER

WMUK APPOINTS SANDRA INGRAM AS A TRUSTEE AND CHARITY TREASURER

11-Oct-2018
WMUK continues to grow with our newest addition, Sandra Ingram as our Patient Trustee and Treasurer

WMUK WELCOMES ERIC LOW AS AN INVALUABLE ADDITION TO OUR BOARD OF TRUSTEES

WMUK WELCOMES ERIC LOW AS AN INVALUABLE ADDITION TO OUR BOARD OF TRUSTEES

12-Oct-2018
Eric Low, former Chief Executuve and founder of Myeloma UK, has joined WMUK Board of Trustees. Eric brings with him invaluable knowledge and experience to carry forward the vision of WMUK.