James Whale Fund for Kidney Cancer at the House of Lords

What an evening! Well done to the James Whale Fund for Kidney Cancer team for bringing this all together.

This year the world famous singer, composer and piano player Buddy Greco together with this talented singing artist wife, Lezlie Anders were guests at this year’s James Whale Fund Presidents Dinner (Buddy is in the foreground of the picture below with Lezlie standing next to him). We were lucky enough to be sitting next to them and what a charming couple they are. They’ve recently left California to settle in the UK and are still touring and working as much as ever.

You can also see Peter Stringfellow and his wife in the picture with Jane Cure standing between them. Peter Stringfellow made an excellent off the cuff speech to close the evening.

The stars of the evening though have to be Adrian and Jane Cure who gave us a moving talk about their experience of Kidney Cancer and how it has impacted their lives. I think it was an inspired choice to have them speak as it really drove home why we were all there and why the charity needs continued funding. You can see Ade below giving the talk. What was truly inspirational was how they are handling it all, rather than dwell on the negatives of the disease and how it has touched them it was all about the positives and how every day matters. In fact Ade gave a toast to “Life”.

Adrian and Jane have also brought out a 2011 calendar called “Wellesbourne Blooms” in the style of “Calendar Girls” in aid of the James Whale Fund, well worth buying. Beautiful photography and very tastefully done. There is also an accompanying DVD to go along with it on the making of the calendar. If you want to purchase one then visit their web-site here and follow the links. Or you can purchase the calendar direct from the James Whale Fund site here.

A magnificent evening was had by all and again a big thank you to the James Whale Fund for making this happen.

Posted under Andy Thomas

This post was written by AndyThomas on September 27, 2010

AN INTERNATIONAL VOICE FOR KIDNEY CANCER PATIENTS

 

Rose Woodward writes ……………..

First Conference of The International Kidney Cancer Coalition Gives Voice to National Patient Groups

Organizations from 19 countries, 5 continents support new international kidney cancer network

FRANKFURT, Sept 13 2010 – Patient advocacy groups from 19 countries across 5 continents met in Frankfurt for an innovative conference, “Expanding Circles in Kidney Cancer”, from Sept 10-12. Delegates from national patient support and advocacy organizations from around the world met for the first time to exchange best practices among national groups and work together on projects of international interest to the kidney cancer community.

Patient advocacy groups celebrated the new International Kidney Cancer Coalition (IKCC) as an independent, democratic network that will support existing national organizations and nurture the development of new patient-led groups interested in this rare, but increasingly prevalent cancer. Joined by leading kidney cancer oncologists from the United States, India, Germany, the United Kingdom and Canada, patient group delegates debated and proposed a number of initiatives that require an international focus.

“We are thrilled with this clear endorsement of IKCC which reinforced the need for a collaborative international network, Markus Wartenberg, Executive Director, Das Lebenshaus, a German patient support and advocacy organization committed to improving quality of life for patients living with kidney cancer. “Patient groups like ours have long sought an opportunity to collaborate on clinical research priorities at the international level.”

Based on the success of this first conference, the IKCC will be reaching out to other national patient organizations to join the network.

“IKCC offers national groups the opportunity to share best practices and to help more patients ” says Rose Woodward, Founder of the UK Kidney Cancer Patient Support Network and Patient Advocate for the James Whale Fund for Kidney Cancer . “As patient-led organizations, we all have to use our funds very carefully, in the UK we  already work in close partnership with the James Whale Fund for Kidney Cancer and the Kidney Cancer Resource, but through the IKCC we will collaborate on many more projects and share our resources openly with one another across national boundaries.”

“The IKCC conference was truly unique in the world of kidney cancer” says Gilles Frydman, Founder of the global ACOR (Association on Online Cancer Resources) and KIDNEY-ONC listserv with over 2,000 members worldwide”, adding “the trend towards patient-driven research will demand a global focus.”

Patient groups from India also attended the Conference . “the IKCC provides an opportunity to work across borders in a culturally sensitive and respectful collaboration,” says Vandana Gupta from VCare Foundation based in Mumbai “and we look forward to growing our patient support capabilities in India as a direct result of this conference.”

About the International Kidney Cancer Coalition (IKCC)
IKCC is an independent, democratic network of patient support and advocacy organizations established with the mission of improving the quality of life of patients and their families living with kidney cancer. IKCC provides information, support, and assistance to national kidney cancer organizations. All kidney cancer organizations are welcome to join the IKCC . An open invitation exists for all kidney cancer groups where ever they are in the world, to join with us and provide a  global voice for  kidney cancer patients. 

For more information about the International Kidney Cancer Coalition, visit www.ikcc.org

For more information please contact:

Rose Woodward -  Email – rw@jameswhalefund.org
Patient Advocate
The James Whale Fund for Kidney Cancer
www.jameswhalefund.org & www.kidneycancersupportnetwork.co.uk

07896.88 20 84

Posted under Rose Woodward

This post was written by Rose Woodward on September 25, 2010

James Whale Fund Forging ahead

Make a note of this date in your diary 17th November. Why? Well first off it’s my birthday! But secondly the James Whale Fund is holding another Patient Day and (for the first time) a Nurses Study Day.

It seems a while since the last James Whale Fund patient day, but this one is almost upon us, so if you want to be part of it then make sure you register on-line at The James Whale Fund Web-Site.

The last one was a huge success and this one promises to be even better with more topics and discussions specifically for the patient and carer. I always love these things because it’s a great excuse to meet people face to face, we spend so much of our time on-line and I think it’s so much nicer to know who you’re talking to across the Internet.

I also look forward to hearing about the outcome of the first IKCC meeting (International Kidney Cancer Coalition) it’s good to see other organisations around the world getting round the table to share knowledge and experiences.

On top of the patient day a Nurses Study Day will be held at the same time and location and if you want more details of that then go to The James Whale Fund Web-Site.

There have been lots of fundraising events this year and it’s great to see the money is being put to best use and the focus is fully on the patient with days like these.

I hope to see you all there in November. My special dietary requirement for the day is “Birthday Cake”!

Please sponsor me by clicking on either of these links VirginGiving or JustGiving

Posted under Andy Thomas, Patient Day 17thNov2010

This post was written by AndyThomas on September 14, 2010

Tags:

Rose Woodward……….. www.kidneycancersupportnetwork.co.uk

Just finishing the presentations for the 1st ever International Kidney Cancer Conference for Patient Groups to be held in Frankfurt next weekend…leaving on Thursday and the Conference is Friday , Saturday and Sunday so I will be returning home on Monday…. I think this is going to be so valuable – we have all worked very hard to make it happen and the support has been tremendous.

We have invited every single Kidney Cancer Patient Organisation we know about to attend and we will have representatives from 16 Countries meeting with us;  UK, Germany, Canada, Africa, Australia, India, Eastern Europe, USA  etc and it has been great to see their enthusiasm for the project.  Our leading renal Clinicians have been very supportive of our starting up this type of Coalition  which was desperately needed and we are lucky with those who have chosen to attend and talk to us about their work, This is a patient led patient orientated initiative. We thought of it , we set about making it happen .

 By Patients for Patients about Patients !!

We have a very basic start – up website here… have a look.

Our website is currently under construction – but below you will find the main documents for our Conference EXPANDING CIRCLES.

 I’m so looking forward to meeting everyone, It was wonderful to meet Ken Youner and Jay Bitkower  and Gilles Frydman earlier in the year when we set-up the organising committee.  Markus Wartenburg and Dr Marion Beier have been doing so much work to make this happen.  Deb Maskens and I have been working together on some presentations – quite a double act !!! I joked to say we should hire ourselves out  for wedding, birthdays and BarMitzvahs for fundraising  !!

More to come !

Posted under Events, General, Rose Woodward

This post was written by Rose Woodward on September 5, 2010

Who will notice another life ending? –

 

Rose Woodward – www.kidneycancersupportnetwork.co.uk

Last night in Scarborough Fred Binch died. Fred was a kidney cancer patient who was denied treatment by his Primary Care Trust. Fred’s Oncologist wanted to treat him him with a new and effective  drug called Everolimus.  Fred had responded well to previous treatments and his Dr’s  thought he would do so again if he was given the opportunity. But somebody sitting behind a desk in a PCT Office miles from the Hospital deciided they knew better than the  Oncologists and the MDT and they had a meeting and condemned Fred to a premature death all to save £100.00 per week. The difference between the cost of the treatment Fred had been taking and the new treatment they wanted to prescribe for him.

Imagine the last few weeks of your life knowing that a  Group of people have decided you cannot have the treatment  your Dr’s say you need. Someone like Fred didn’t have a cats chance in hell of being able to pay for the drug he needed. yet with  dignity  he just kept on fighting as his  disease  robbed him of his speech and his very life’s breath as a tumour continued to grow  putting pressure on his windpipe.  Cruel beyond understanding. This was  a man  who had worked hard all his life, married his childhood sweetheart, raised a family – lived a “good life”.

He was let down by the very people charged with looking after him. Do they care – do they even know? Fred was just another nameless, faceless statistic. A kidney cancer patient who had the audacity to ask to be  treated.

To me he was a quiet hero.  At peace now.

Rose  x

Posted under Afinitor(aka Everolimus/RAD001), Cancer Drugs, N.I.C.E., Rose Woodward, Social Medicine

This post was written by Rose Woodward on September 1, 2010