Association for Multiple Endocrine Neoplasia Disorders

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

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.

 

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.

People with chronic rare disorders are best cared for in an experienced multidisciplinary team (MDT) hospital setting - fact.  But how do you know that you are?  Today, which rather appropriately is Rare Disease Day, AMEND launches its latest publication: How to Choose Your Medical Team.

Developed with AMEND's Medical Advisory Team, this guide gives patients the full low-down on MDTs and information on how to ask the right questions to ensure that they receive the best care possible.

As always, our resources are free: you can download the guide from this website, or contact the UK office for your free hardcopy.  A version of this guide for the USA will follow shortly.

A carer for an MEN2b patient commented that the guide is, 'very informative and easy to understand...a must for patients and their carers.'

 

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.

Nicole Sparkes, President of the Merton College Junior Common Room (JCR) and Committee Member for Charities, contacted AMEND yesterday to provide an update on the year-long fundraising activities of JCR.

After a busy year of auctions, charity meals, custard pie fights and sales of an eyebrow-raising, blush-inducing 2013 naked calendar, the students raised just under £2500 for each of 4 charities, including AMEND.

The students thoroughly enjoyed their 'liberating experience', and had insisted that, in the interests of fairness, the Merton JCR Mascot, 'Monkey' (pictured above), appear in each of the photos without his customary tshirt.  Jezah Khamisa, a first-year Historian, claimed: “The calendar clearly defies the idea that fun goes to die at Merton.”

We would like to thank all the students who took part in the fundraising activities for their fantastic efforts in raising this money (especially for baring all in the cold early morning photo-shoots!).  The funds will be put towards expanding the AMEND Young Investigator Awards to a further 3 specialist medical societies relevant to the diseases we support in addition to the one already awarded at the British Endocrine Society annual meeting.  Who knows, there may be a Merton College medical student who wins one in the future!

Special thanks also go to AMEND member Callum Hackett, who put AMEND forward as one of the JCR’s nominated charities for 2012.

We wish them all well with their continued studies and fundraising adventures!