Showing posts with label ADAO. Show all posts
Showing posts with label ADAO. Show all posts

Thursday, 27 February 2014

Mesothelioma, the media and Mavis

There are some organisations with high profiles which are very good at grabbing media attention, but it is rare to find the eye of the media turning towards an individual blogging away on a small scale and at much more personal level.  

You can bang on for years, trying to raise awareness about something important, but generally the only people who listen are family and friends, and those with a specific interest in the subject you blog about.  As far as the national and international media are concerned, you do not exist.  

But there are exceptions to that generality and one of those is fellow meso blogger, Mavis Nye. Mavis writes a daily blog Living with Mesothelioma (link on the right) which has attracted attention far beyond her wide circle of friends in the mesothelioma and motor home communities.  Likewise, the number of people following @grandmamavis on Twitter is rising steadily.  

Mavis works really hard at reaching out to people.  I don't know how long she spends each day sitting in front of the computer sending and reply to e-mails; posting and commenting on Facebook in groups and private messages; writing tweets; publishing her daily blog and such like, but it must be a long time - she is so productive!  

It has paid off in the past, with features in the local and national press, but recently Mavis has hit the national media big time.  Back in January, she was interviewed on the BBC Politics Show, talking about the new Mesothelioma Bill.  She was recently invited to tea with the Director of Corporate Development of Verastem Inc, a major American drug company which is working on the COMMAND clinical drug trial here in the UK.  

More recently, and at his request, she found herself sitting beside Lord Saatchi at the first "Google hangout" televised in the House of Lords on Monday to launch the Saatchi Bill (Medical Innovation Bill).  


She then went on to give interviews to the press and TV. Quite a celebrity :-)  

No wonder she was awarded the Asbestos Diseases Awareness Organisation's Alan Reinstein Award for her commitment to education, advocacy, and support to countless patients and families, and the Independent Asbestos Training Providers (IATP) Meso Warrior Award in 2013.  Where can she go from here, I wonder?



 Read the local press article here!

Mavis has what we need to raise awareness of this awful disease.  Someone who is living through it, helping others all the time while she desperately seeks the answer to the question what next for herself?  Mavis has already had four chemo regimes and her "Mr Nasty" is growing again, albeit slowly according to her last scan back in December 2013. She has exhausted all the usual options but is still willing to put herself forward for innovative treatment, so is a prefect person to help front the Saatchi Bill campaign!  

I usually dedicate blogs to meso warriors with a heavy heart as it is a way of saying goodbye. Yesterday, we said goodbye to another warrior, Ernie and our thoughts and sympathies are with Dot, his wife, and their family and friends.  

But rather than use today's post to say goodbye to another brave warrior, I'm delighted and proud to dedicate this post to someone who is still full of life and determination.  Well done Mavis, meso warrior queen!  

Thursday, 20 February 2014

Action stations: Mesothelioma Priority Setting Partnership (PSP); Saatchi Bill; Access to Medicine and the ADAO

I have written previous posts about the Mesothelioma Priority Setting Partnership, and the Saatchi Bill.  Both of those are now gathering momentum.

The PSP has now launched its survey to help inform future research into mesothelioma diagnosis, treatments and care. You can access the survey by following this link (click here).  A report in the Independent newspaper tells you more: Scientists ask for sufferers of the asbestos related cancer mesothelioma to step forward to boost research.

The official launch of the Saatchi Bill takes place in the House of Lords on the afternoon of 24 February.  The Meso Warriors have been invited to attend. Sadly, we can't take part as it clashes with Steve's hospital appointment but we know that our interests will be well represented by Mavis and the other warriors!  

Another campaign kicks off next month.  Empower Access to Medicine has issued a Call to Action to demonstrate to the Government and Parliament that the lack of progress in drug development affects real people and real lives.  The campaign is hosting a lobby of Parliament on 25 March 4pm-6pm and is looking for patients and/or their families to attend with their constituent MPs so as to get the issue on to the agenda of the back benchers.  If you would like to get involved, please contact the campaign team through the website www.accesstomedicine.co.uk. 

Last but not least, the Asbestos Disease Awareness Organisation (ADAO) invites all meso patients and carers to take part in its survey on the impact of clinical trials on mesothelioma and lung cancer patients.  You can access the survey by clicking on this link then click on the pencil. Closing date 23 February!

Good to see so many things kicking off at this time! 


Friday, 3 January 2014

Light a candle



Please join us for the longstanding Mesothelioma Warrior Candle Lighting tradition on January 4th, as we light candles in love and support for Mesothelioma Warriors around the world. 

The Asbestos Disease Awareness Organisation (ADAO) published the 2013 Mesothelioma Warrior Candle Lighting List with nearly 800 names on Dec. 27th  2013.  Steve's name is there, right at the end of the list.  

To find out more and light a candle to show your love and support, please click on this link .

We are still in New Year celebration mode; normal blog writing service will be resumed next week when we get back to reality......

Saturday, 28 April 2012

Workers Memorial Day - spread the word and raise awareness



Today is Workers Memorial Day - a time to remember and pay tribute to all those who lost their lives as a result of negligence in the workplace. For every life that has been lost, the ripples of that loss spread out through families and friends, over time and through space, all over the world.  


In our family, Steve's father died from mesothelioma after being exposed to asbestos whilst working in the shipyards of Bristol. The loss of one man deprived the surviving family of a husband, a brother, a father and a grandfather.  


27 years ago today Linda and Alan Reinstein started their married life together in America, only to have it stolen by mesothelioma in 2006 when Alan died after a battle lasting almost three years.  




Alan was a former president of the Asbestos Disease Awareness Organization (ADAO). Today the ADAO continues to act as a voice for the victims of all asbestos-related diseases.  The ADAO's latest event is "See for Yourself" Photographic Education Campaign.  You can see it here:





Our small contribution to raising awareness of the risks associated with asbestos is this blog in which we share our experience of living with mesothelioma since June 2009 when Steve was diagnosed with this incurable cancer.  I hope that what we have written will have already brought hope to some who find themselves faced with this diagnosis, and will continue to do so for years to come.  


I also hope that reading the blog has raised your awareness of the risks posed by the presence of asbestos in our homes, schools and places of work.  If as a result, just one person who might otherwise have breathed in these deadly fibres takes the precautions necessary to protect their health, then it will be worthwhile. 


Please spread the word to others who might be at risk to raise awareness of the dangers of asbestos, and to those who might take some comfort from our experience to date. Thank you.