Association for Multiple Endocrine Neoplasia Disorders

 

Saturday 11th May saw another hugely successful AMEND Patient Information Day.  At this, AMEND's 11th such annual event, a full multidisciplinary team (MDT) was in attendance throughout the day, providing fascinating talks on different aspects of MEN, and forming an expert panel for our hour-long afternoon Ask the MDT session.

Speakers included Professor Karim Meeran (London) and Dr Constantine Stratakis (NICHD, USA).  Films and slides from all the main presentations will be available to view soon on the website.

"Brilliant day.  Lots of information.  Wonderful speakers"

"Enjoyed meeting other people/families with similar problems"

Feedback from the day has been excellent, with several families appreciative of the opportunity to be able to bring their children to take part in kids' activities so that they could attend themselves.

Huge thanks goes to all our wonderful speakers, organising volunteers and attendees, who made the day so successful.

For more information about the 2013 meeting, click here.

Plans are already well underway for the 12th Information Day which will be held at Bristol Zoo on 10th May 2014.  Read about these plans here.

 

We are delighted to report that UK Charity, Macmillan Cancer Support has awarded AMEND a one year grant to provide support and information services to patients with adrenocortical cancer (ACC) in the UK.

This project, working in collaboration with the UK's NET Patient Foundation, will be filling a very real gap for such services currently.  A medical advisory team is already in place and helping to update and produce existing and new information resources.

Further plans include a new ACC specific website and a Patient Information Day along the same lines as those we currently hold at AMEND and NET Patient Foundation for our own patient communities.

For more information on our plans and on ACC itself, see our ACC webpage.

 

Massive thanks are due to our six fabulous families who took part in our Project Superhero! Family Focus Day near London on Saturday 23rd March. A great time was had by all with adults and youngsters providing AMEND with fantastic information on the way forward for the Project.

Project Superhero!, funded by the Big Lottery Fund, will develop information resources on MEN1 and MEN2 for children and young people. The resources produced aim to encourage open family dialogue about the disorders, as well as encourage better engagement from the young people with their medical teams. These aims are vital for any family living with a chronic genetic condition like Multiple Endocrine Neoplasia.

AMEND would also like to thank animator, Mr Munro, Kids' facilitator and teacher Anthony O'Flaherty and photographers Jess and Martin Reftel Evans from Amorfo Photography for giving up their time to make this event truly successful.

Development of our information resources is now underway!

For more information on Project Superhero! and the Family Focus Day, please visit our webpage.

Huge congratulations and thanks are due to member Steve McDonald (pictured above) and his 21 friends for completing an extraordinary fundraising challenge for AMEND on Easter Sunday.  Their efforts raised a whopping £2335 for AMEND so far - fantastic folks! 

Here is some of the story in Steve's own words:
"Just to let you know that 22 of us went up a very snowy and icy hill in North Wales on Easter Sunday.  As it turned out, it was too dangerous to go up Snowdon so we went up a mountain called Glydder Fach which overlooks Snowdon.  We had a great walk and all came down safely.  On the same day two groups were rescued by helicopter from the same mountain!.....With such a great team around me, it was one of the best life experiences you could imagine.  Exhilaration, friendship and challenge were the order of the day, with a smattering of determination thrown in.
 
The thermometer showed a temperature of -17C with the wind chill.  Crikey it was windy.  Then we had to do a few good head first slides like a big kid in the snow on the way down.  After the walk, we sat and drank several cups of tea - honest, only tea - in the Pen Y Gwryd pub to rehydrate before heading off to a rented house together nearby.  We went to town celebrating until late.  Just brilliant."
 
The fun I have had organising the challenge and being together with friends and family have been a huge boost to me.  A weekend that I will never forget...really, really special."

Steve, you are an inspiration!

Steve (2nd from left) and some of the 21 friends and family who accompanied him

The March newsletter is now available of registered members to view on our website (please login first).

This quarter we bring you an extended research section with news from around the world, as well as from AMEND's own Research Fund.

There is also news of the final AMEND Annual Information Day programme together with details of the kids' activities we are providing this year, and dates for the 2013 Roadshow meetings in the UK.

You can also find out what it was like to trek the Sahara with no adrenal glands in our My Story feature.

As always, there is much, much more, so enjoy your newsletter.

If you are not already a registered member of AMEND and would like to view the newsletter, please click on 'Become a member' - membership of AMEND and use of all it's resources is FREE.

Our friends at the Addison's Disease Self-Help Group (ADSHG) are conducting a survey of experiences of steroid dependent patients with emergency treatment.

If you live in the UK or Eire, and are steroid dependent due to bilateral adrenalectomy or pituitary surgery, please consider taking a few minutes to complete the online questionnaire.

This questionnaire is intended for steroid-dependent members of the ADSHG, AMEND, Living with CAH and the Pituitary Foundation. It asks about your experiences of adrenal emergency, when you have needed emergency steroid treatment additional to your normal replacement steroids, and the likely causes of those emergency experiences. It should take you no more than 10 - 15 minutes to complete. We will be sharing the findings with our advisory medical panels, the Society for Endocrinology's Clinical Commitee, London Ambulance and other medical  practitioners with an interest in the health service needs of those with steroid-dependence.  We hope the insights from this survey will help to improve health service provision in the UK and Republic of Ireland for the future. Thank you for taking the time to complete it. From the trustees of the Addison's Disease Self-Help Group, AMEND, Living with CAH and the Pituitary Foundation.

The link to the questionnaire: https://www.surveymonkey.com/s/Steroidemergency

Today, Rare Disease Day, AMEND and the NET Patient Foundation announced a partnership agreement to extend their existing services to provide support and information to Adrenocortical Cancer patients in the UK.

This joint project, which comes at the request of medical specialists familiar with the work of both groups, will produce up-to-date information resources and provide opportunities for UK ACC patients to meet for the benefit of mutual support whilst learning more about their disease.

ACC is a very rare form of neuroendocrine tumour of the adrenal gland that affects around 1-2 per million of the population resulting in around 50-120 new cases in the UK each year.  Late diagnosis is common in adults though less so in children and the course of the disease differs significantly by age.

A preliminary webpage is already available on the AMEND site and a medical advisory team in place to work on resources for patients.  AMEND's counselling helpline and the NET Patient Foundation's nurse advice line will be made available to ACC patients.

AMEND is delighted to be working with our friends and colleagues at the similarly well established NET Patient Foundation on this vital project.