Association for Multiple Endocrine Neoplasia Disorders

AMEND's latest newsletter (Issue 49) is now available to registered members to view and download on this site.  Please remember to log in!  Registration is free, so click here to become a member of AMEND and to access the latest newsletter.  Hear about our 2015 Summer Intern's experience, our 2015 Research Awards totalling £50,000, and much, much more.

Four research projects totaling £50,000 will be funded by AMEND this year.

Thanks to some exceptional fundraising by members and supporters during 2014, a special one-off fund of £40,000 was available specifically for research into medullary thyroid cancer (MTC), the most common cause of death in MEN2.  MTC also occurs alone and independently of MEN.  Winners this year were Professor Neil McDonald (London), Professor Chris McCabe (Birmingham) and Laura Moss (Cardiff).

As usual, the annual award of £10,000 was available for projects to do with MEN as a whole.  This year's winner was Dr Paul Newey (Dundee).

AMEND is delighted to be able to fund such a range of valuable research opportunities this year.

To read more, click here to visit our webpage.

In October 2014 AMEND made a submission on behalf of patients to the All Wales Therapeutics & Toxicology Centre in support of the appraisal for use of cabozantinib (Cometriq™) for metastatic medullary thyroid cancer (MTC).

We are pleased to report that the AWTTC confirmed on Tuesday 10th February, that the appraisal received Ministerial approval at the end of January 2015, and that cabozantinib will be available for use in patients with metastatic MTC by the end of April 2015.

Appraisal Lead, Dr Claire Davis expressed her thanks to AMEND for the submission: "I would like to thank you directly for your help with obtaining patient/carer views for the cabozantinib (Cometriq®) appraisal.  The information provided really helped to inform members of the appraisal groups."

AMEND CEO, Jo Grey, and brave volunteer, Lu launched a new awareness raising campaign today to encourage other patients to be proud of their scars.

'Scars are our story and are nothing to be embarrassed about' said Jo.

Jumping on the backlash advertising to the controversial dieting powder, Jo and Lu with the help of AMEND's graphic designer, produced their own images to help others feel more confident on the beach in summer.

'Your scars show that you have been through a battle and came out victorious!' comments Lu.

Read more about the campaign here.

Registered members of AMEND who have used our free Counselling Service can help us to maintain and develop the service by telling us what you think.

Service user input is incredibly valuable in this regard as well as in helping to source funding to ensure that we can continue to provide the service.

Please take a few short minutes to complete our online survey.

Click here for more information on the service.

Click here to access the survey.

Thank you

 

There was something for all the family again this year at AMEND's Annual Patient Information Day on Saturday 9th May in Leeds.

Around 70 attendees enjoyed social time and a range of fascinating talks, not to mention a great Mindfulness experience session.

You can now view all the main presentations together with their integral slides on our website.

Click here to view the videos and write-up

AMEND's UK Annual Information Day in 2015 will be held at the Thackray Medical Museum in Leeds, North Yorkshire on Saturday 9th May.

There will be something for everyone, including a creche for the younger family members and special information sessions and activities for the teenagers.  A range of basic to advanced information sessions for adults on multiple endocrine neoplasias 1, 2a and 2b will occupy our morning, with our popular Ask the Expert Panel session in the afternoon.  There will be plenty of time for socialising with fellow patients, carers and AMEND staff and volunteers throughout the day as well as an additional opportunity to attend an informal dinner in the evening.

We do hope you can join us for our popular free event at this fascinating venue.

Click here to learn more and book your spaces now!