Previous Thread
Next Thread
Print Thread
Joined: Mar 2002
Posts: 4,912
Likes: 52
OCF Founder
Patient Advocate (old timer, 2000 posts)
OP Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,912
Likes: 52
This is a note from friend and co anti-HPV warrior Tristan, the head of the British HPV and Anal Cancer foundation. I hope that quickly we can identify someone in the UK that is willing to be interviewed on Monday about their experience. Besides a survivor/patient they are also looking for someone that is pro vaccination and who has chosen to vaccine their children, particular a male son.

Calling UK HPV+ Oral Cancer Male Survivors in the UK

Dear OC survivors,

I co-founded the HPV & Anal Cancer Foundation in 2010 and also HPV Action in 2013 which is a collaborative partnership of 25 patient and professional organisations that are working to reduce the health burden of HPV. The Oral Cancer Foundation is a member as well � I am a dear friend of Brian Hill and he�s been an invaluable source of insight and guidance since my family started the HPVACF after my mother Paulette died from HPV-related anal cancer in 2010.

HPV Action is delivering an advocacy and PR campaign next week that aims to achieve gender-neutral HPV vaccination in the UK, so that boys as well as girls are offered free immunizations. The HPV and Anal Cancer Foundation and Oral Cancer Foundation have used advocacy successfully in the US to extend the HPV vaccination to males and we�re hoping to do the same in the UK, Europe, and globally, until HPV is eradicated.

On Monday, we are holding a press day in the UK that will coincide with the official launch of HPV Action. This will be a fantastic opportunity to raise the profile of HPV-related cancers and the vaccination that can prevent them. The media are particularly interested in case studies � people, specifically men, that have been affected by HPV-related cancer and are willing to speak about it and the benefits of vaccination. The interviews will be organised and fully supported by our press team who appreciate that it can be a very sensitive and personal conversation.

If anyone is based in the UK and is interested in helping to raise awareness of this devastating disease, please do get in touch for more information.

Many thanks,
Tristan

Even if you are not the one who is willing to do an interview, please spread the word to other HPV related patients in the UK that might step up to be part of the great effort. Tristan was part of our effort here at the CDC to fight this battle with OCF (spear headed by our own David CPA). It is our turn to help them now.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)
Offline
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)

Joined: Mar 2011
Posts: 1,024
If you ever need anyone from New Zealand, I would do this. I have 3 sons.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Joined: Mar 2002
Posts: 4,912
Likes: 52
OCF Founder
Patient Advocate (old timer, 2000 posts)
OP Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,912
Likes: 52
OK we haven't raise a UK voice yet, so I am bringing this post back to the top of the list hoping that we get someone to pick it up. There's only a few days left to find someone.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

Moderated by  Brian Hill 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5