Association for
Multiple Endocrine
Neoplasia Disorders

New Group for PPGL Syndromes Launched

AMEND are delighted to announce the formal formation of a new sub-group of our charity; Phaeo Para Support UK.  PPSUK is a part of AMEND specifically designed for our members with inherited Phaeo Para Syndromes (such as those caused by SDH, TMEM127 and MAX mutations).

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New Fundraising Events

Our website lists a wide variety of ways that our members and supporters can fundraise for AMEND during these strange times, from running to cycling and everything in between!  Why not encourage your friends and family to support AMEND, a small charity that works hard to provide all its information and services for free to those who need them?

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Phaeo Para Awareness Week

For the last week of August, we are thrilled to be partnering with the Pheo Para Alliance in the USA and other patients organisations to raise awareness of phaeochromocytomas, paragangliomas, and in particular, the tumours that occur in MEN2, MEN3 and Phaeo Para Syndromes.

Updated Advice for the Extremely Vulnerable

22/06/2020 Today, the Government is outlining the next steps for those people in the UK who were identified as extremely vulnerable, and who have been shielding since lock-down.  These changes are implemented beginning 6 July.

Design a Gland Competition!

For Children's Art Week (science theme) from 29th June to 5th July, we'd like our youngsters to Design a Gland! It can be as weird, wacky and colourful as they like.  Submit entries by 5th July to be in with a chance of winning one of our prizes.

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Cancer52 Patient Survey on COVID-19

✍️ Cancer52, an umbrella group for rare cancers, is running a patient survey for cancer patients regarding your experiences during the coronavirus crisis. They will use the results of the survey to understand how the Covid-19 crisis has affected people with rare and less common cancers particularly on topics like treatment and support; any issues around shielding, and anxieties, concerns and hopes for the future.Please contribute as an endocrine/neuroendocrine cancer patient if applicable. Thanks! 👍

COVID-19 Study Results Updated

We are now up to 21 responses from people with MEN syndromes to our research study on COVID-19.  These include 3 people who needed to visit hospital for severe breathing problems.

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Introducing SDH Syndromes Films’ Launch

We are delighted today to launch our new patient experience films about Succinate Dehydrogenase (SDH) Syndromes.  These were produced as part of our SDH Support UK project thanks to a grant from Advanced Accelerator Applications.

New Dates for Members’ Meetings

Wherever you live, AMEND members are welcome to join any of these gatherings, but you must register first.  Sadly, you will need to provide you own tea and biscuits!  Online meetings for our members have been organised so far for the following dates:

• Saturday 9th May (2-3pm)
• Saturday 13th June (10am)
• Saturday 4th July (2-3pm)

Click here to register

10@10 Mindful Mondays

New Relaxation Series 10@10 Mindful Mondays is a series of 6 relaxation sessions to be streamed by AMEND every Monday at 10am.  Each session is run by Mindfulness Practitioner, Peter Berry, for 10 minutes and will be helpful for anyone feeling overwhelmed during Lock-down or for health professionals, carers or key workers during the COVID-19 crisis.  Free and open to all

Click here to relax

Charity Film Awards Double Awards for AMEND!

It was a great night on Tuesday 21st April at the Charity Film Awards, streamed online due to the Coronavirus pandemic.  AMEND's Film, MEN2B and Me: Ethan (his own words), starring young Ethan Holliman, picked up two awards in our category: The Silver Judges Award and the People's Choice Award.  Thank you to Ethan, Red Goat Productions, Charity Film Awards, and all who voted for the film!

Click to watch all our MEN2B films

Charity Film Awards Night!

Tonight is the Charity Film Awards Ceremony, which will be streamed online from 7pm.  However; before that, we will have a Pre-Awards Party, with interviews with our Film Star, Ethan, his family and our film's producer, Michelle Maynard from Red Goat Productions.  The Party finishes will a lovely tune or two from mother and son musicians (and AMEND members), Anne and Gillie.  

Click here for the evening's full line-up

AMEND Joins Amazon Smile

AMEND is now registered with Amazon Smile.  This programme means that, with every online order you make with Amazon, they donate to AMEND!  It doesn't get much simpler than that!  Select AMEND as your charity of choice when you shop online.  Thank you!

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Research Fund Application Deadline Extended

AMEND's Research Award applications deadline has been moved from April 30 to August 31, 2020.  We know that most new research projects have now been postponed due to the current coronavirus pandemic, so hope that this new deadline will be more achievable.

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MEN2B and Me: Ethan (his own words) Film Reaches Award Finals

We were thrilled to learn that our patient experience film about MEN2B has reached the finals of the 2020 Charity Film Awards.  MEN2B and Me: Ethan (his own words), is a short film that focuses on one of our younger members with MEN2B, Ethan Holliman.

Click here to learn more

COVID-19 and MEN Research Study

In collaboration with our Medical Advisory Team and Trustees, AMEND has developed a research survey for those in the UK with MEN disorders who believe or know that they have had COVID-19 (diagnosed via e.g. blood test or NHS111 online without a blood test).  Patients, family members and health professionals involving in caring for those with MEN1, 2A & 2B, can complete the survey.

Click here for more information

Annual Patient Information Day 2020 Cancelled

We are sorry to report that our 2020 Annual Patient Information Day that had been scheduled for Saturday 16th May in central London, has now been cancelled.  The next Information Day will be held in 2021 and details will be posted about this on our website later this year.  Thank you for your understanding.

New UK Steroid Emergency Card

The UK's Society for Endocrinology have released a downloadable version of their steroid emergency card early due to the coronavirus pandemic. Anyone on replacement steroids (adrenal insufficient) should print out, complete and keep a card with you in case of emergencies.

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Coronovirus (COVID-19) Resources

We're keeping in touch with our Medical Advisory Team to bring you guidance and recommendations on avoiding the current coronavirus pandemic.  Click to read the full article with links and check back regularly for updates. Latest update: 28/04/2020

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Celebrity Patron Supports MEN2B and Me Film

Actor and AMEND Celebrity Patron, Shaun Williamson, famous as Barry in Eastenders and as himself in Extras, wants your vote for our film about Ethan and his condition, #MEN2B, and incurable cancer, #MTC.

Click here to view

Voting open again for Charity Film Awards

In January, after a public vote, our film about Ethan and his diagnosis of MEN2B was shortlisted in the 2020 Charity Film Awards.  The second phase of voting is now open and we need your support once again.

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Spring Regional Meet-ups

There are 6 free Regional Meet-ups organised for this Spring:  Yorkshire and the Southwest (14th March), Leicestershire (22nd March), East Anglia and Scotland (28th March), Northeast (29th March).  Come along for a cuppa and a chat with your Regional Volunteer.  Refreshments and information resources are available at each meeting.

Click here for details and to book

February 4th is World Cancer Day

The theme for World Cancer Day on February 4th is 'I am, and I will'.  Keep an eye out on our social media channels as we raise awareness of the cancers within our community, from adrenocortical cancer, to medullary thyroid cancer and pancreatic neuroendocrine tumours.  There will be messages directly from some of our members and plenty to learn throughout the day.

Big Plans for SDH Syndrome Community

After consultation with our membership, AMEND is developing a new identity and resources for the SDH syndrome community in the UK.  SDH Support UK will be run by AMEND but will have its own website, information resources, patient experience films and social media forums.

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Two New Trustees Join the AMEND Board

We are pleased to introduce our two new Trustees who join the AMEND Board this year.  Dr John Ayuk, Consultant Endocrinologist, and Mrs Miriam Asia, RN, Clinical Nurse Specialist, both work at the University Hospital Birmingham and bring many years of expertise to their new roles.  We look forward to working with them over the next 3 years!

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New Counsellor Joins the Support Team

This year, we welcome David Phipps to the AMEND Counselling Service Team.  David takes on the role of Associate Counsellor and will be available to our members when our Lead Counsellor, Kym Winter, is unavailable, and for those members who may perhaps rather talk with a man. David's particular interests relate to how individuals can find ways of living full and meaningful lives after having experienced, or when still experiencing, troubling psychological or physical health difficulties.  

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MEN2B and Me: Ethan (his own words) Film Shortlisted for Award

We were excited to learn today (15th January 2020) that one of our patient experience films about MEN2B has been shortlisted for a 2020 Charity Film Award.  MEN2B and Me: Ethan (his own words), is a short film that focuses on one of our younger members with MEN2B, Ethan Holliman.

Click here to learn more