Blog from CEO Jamie Rae

1367934097
07May

Hi everyone, 

This is a quick update on what TCF have been up to since our launch (and before) and to say thank you to everyone who has supported us on this journey. Some of you may know me but for those that don't, my name is Jamie Rae and I founded the Throat Cancer Foundation after going through Oropharyngeal Cancer in 2010. I know firsthand how hard the treatment journey can be and I wanted to create a charity which could help others that are in the same situation.

The whole team here at TCF have been working very hard over the last few months and have met with some remarkable people: patients, doctors, psychologists, surgeons, nurses, nutritionists, carers and fundraisers who have helped me and the team here at TCF to understand what is needed most by people who are going through the nightmare of a cancer diagnosis, treatment and recovery. We have now got several projects in the pipeline which we are working very hard to get off the ground, including videos to help people going through throat cancer, creation of peer to peer support groups, creation of information leaflets to cover every aspect of throat cancer from symptoms through to long term recovery, medical research and clinical trials for head and neck cancer and much more. This work is on-going and being developed with members of our clinical team and patients we have met and is vital to ensure that anyone who needs support and information about throat cancer can find it. 

I would like to extend my thanks to everyone that has helped us get to this point and who continue to help up develop the work that we are doing. In particular to our Clinical and Scientific Team whose help has been invaluable, to all the patients we have met around the country who have shared their stories and experiences to help others and to all the people that have given up their time to do amazing fundraising events to raise money for TCF: Geoff Battla who trekked through the Himalayas, Chris McGall and her team who undertook the challenge of Xtreme Southport (think a giant version of Total Wipeout), Penny and Helen who are running not one but two marathons in honour of their late father Michael. Without the support of everyone we could not have gotten anywhere and I want to take this opportunity to thank everyone for their efforts to support us.  

Finally, I want to draw everyone's attention to our HPV campaign and how we are progressing with that. As someone that has been through an HPV positive cancer, I am determined that no one should have to go through the same nightmare as me and so many others around the world. HPV stands for Human Papillomavirus and is a virus which lives on the skin. There are over 100 strains of HPV and they can cause various health problems from the relatively harmless to deadly cancers. HPV can cause throat cancer but is also the culprit behind a number of other cancers such as cervical, anal, penile, vulval and vaginal cancers.

We have been working hard to build partnerships with other organisations who support people affected by these cancers and build a campaign to tackle HPV head on. HPV is a global problem. It is getting bigger and, personally, worries me immensely. Please do take the time to read over our information about HPV and if you have any questions do not hesitate to get in touch with us.

As part of our campaign we were delighted to have been invited to SHINe last week (Scotland HPV Investigation NEtwork.) by Professor Heather Cubie OBE, to speak about our work and why we are campaigning to extend HPV vaccination to boys. It was great to meet some of the people who can help everyone understand HPV and what we can do to prevent it causing cancer. It was a fascinating day, with lots of lively debate and it was very encouraging that many people there supported our campaign and were very interested in the work that we are doing. 

Furthermore, thanks to our lobbying and petitioning we have been given the opportunity to speak to the Scottish Parliament Public Petitions Committee about HPV vaccination and why it must be extended to include boys as a matter of urgency. All this has been achieved with everyone's support and a few months of hard work and we will keep working hard and we will continue to grow and gather support and we can ensure that kids born today will all be protected from HPV and the diseases that it can cause.  

We will keep you all up to date here on our website and via our social media on facebook and twitter, so please stop by and check out what we are doing. If you, or someone you care about has been diagnosed with throat cancer and you need support, then please come to us. Email us at [email protected] or use this page to send us a message. You are not alone and we are here to help you on your journey. 

Best wishes, Jamie Rae

(3) Comments

  • Paul Russell
    07 May 2013, 19:53

    Great read this Jamie. I finished my treatment for hpv throat cancer in January and have been following the throat cancer foundation since. I can only thank you so much for setting up this charity, its been a really great tool for me to gain information, listen to others experiences and it raises awareness which is so needed. I'm working on writing down my cancer journey so that it can use it on the website if needed. I'd like to get as involved as I can, this experience has really changed my perspective and how I want to spend my time. Thank you very much again for your generosity and time that you have given in setting up the foundation, its really worthwhile.

  • Ewan Lumsden
    08 May 2013, 17:18

    Thanks Paul for your feedback.

    We would love to share your story on the site. I have your email address so I will be in touch!

    Thanks, Ewan

    Many thanks, Ewan

  • Simon
    10 May 2013, 21:20

    British Medical Journal May 11th 2013. Editorial page 5. HPV vaccination -reaping the rewards of the appliance of science.....'These are exciting times in the science of HPV and the world can confidently look forward to the virtual elimination of gential warts, recurrent laryngeal papilloma, most gential cancers and some 60% of head and neck cancers.'....Also comment 'What about including boys in the national vaccination programme in the UK?' ...many positive points as to why vaccinate boys as well as girls.
    Research paper page 10...Australians five years into national human papillomavirus vaccination programme....read on

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