News Posted: 14/07/2010 | Ministry of Paintball Offer
AMEND has x16 8-person VIP Passes to any Ministry of Paintball site in the UK or Australia.  Each pass is valued at £200 (includes equipment/gun hire and lunch for 8) and expires on 15 September 2010.  Donations from £50 per 8-person VIP Pass gratefully received.  Further details of the terms and conditions can be found at http://www.ministryofpaintball.com/uk/termsconditions.php...

News Posted: 27/06/2010 | FASCINATING DAY AT MD ANDERSON
Jo Grey had the absolute privilege to meet AMEND members, MEN patients, their family members and the endocrine team at the MD Anderson Cancer Center MEN Conference on Saturday 25th June.  A huge group of around 70 MEN1 and MEN2 patients listened to a packed day of talks from members of the team.  These included talks from world-renowed Dr Robert Gagel, surgeons Nancy Perrier and Elizabeth Grubbs, Genetic Counsellor Thereasa Rich, Specialist psychiatric nurse Mary Hughes, PGD and p...

News Posted: 15/06/2010 | UPCOMING UK AREA MEETINGS

The following UK AMEND area meetings have now been scheduled for 2010:  Northern - 10th July; South West - 17th July; Midlands - 14th August; East Anglia - 4th September.  If you would like further information or to book your place, please go to Contact Us.

News Posted: 10/06/2010 | 2010 2nd Quarter Newsletter Available to View

Registered members of AMEND can now access the 2010 2nd Quarter Newsletter through 'Publications' in the 'Resources' section of this website.  This quarter you will find a MEN1 My Story, a round-up of the 2010 AGM & Information Day and a MEN2 Research Summary amongst other articles of interest.  Join AMEND today to view the latest newsletters - it's FREE!

News Posted: 15/05/2010 | 2012 Sahara Trek for MEN Research

AMEND has teamed up with Discover Adventure Ltd to offer its members and supporters the opportunity of a lifetime: a 10-day trek through one of the world's most beautiful, remote and challenging environments - the Sahara desert in North Africa.  AMEND needs at least 20 people to sign up for the trip which will run from 3-12 November 2012 and to raise at least £2500 each in sponsorship.  We're organising this now to give everyone the maximum time possible to raise the funds.&nbs...

News Posted: 28/04/2010 | DEBI'S LONDON MARATHON SUCCESS!
Congratulations and thanks go to Debi Gaddes, who completed last Sunday's Virgin London Marathon in 4 hours and 40 minutes, and still looked fresh as a daisy at the end!  Debi raised over £600 for AMEND which is outstanding.  Huge thanks from everyone at AMEND!...

News Posted: 26/04/2010 | HULL BALL CANCELLED
Unfortunately, due to circumstances beyond AMEND's control, the Fundraising Ball which had been scheduled for Saturday 12th June in Hull, UK, has had to be cancelled.  Ticket refunds are being arranged.  Apologies to anyone who had been looking forward to it....

News Posted: 09/04/2010 | UK CHIEF MEDICAL OFFICER'S 2009 ANNUAL REPORT PUBLISHED
This week saw the publication of Sir Liam Donaldson's 2009 Annual Report which includes a 7 page report on the current state of and recommendations for the management of rare diseases (like MEN).  Actions recommended include: strengthening the network of reference centres for rare diseases to enable better coordination of specialist services, including the transition from paediatric to adult services, and appointing a National Clinical Director for rare diseases to oversee the development o...

News Posted: 23/03/2010 | LOUISA RUNS AGAIN!
Please sponsor Louisa Hill as she aims for a personal best at the Manchester 10K run on May 16th.  Louisa is a regular and valued fundraiser for AMEND.  We wish her every success!  She is also the first to use our new fundraising site, Virginmoneygiving.  Support Louisa at http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.ac...

News Posted: 10/03/2010 | NEW! AMEND FACEBOOK GROUP

New social networking group for AMEND on Facebook:

http://www.facebook.com/topic.php?topic=13960&uid=10150134116450347#!/group.php?gid=10150134116450347

News Posted: 09/03/2010 | 1st QUARTER NEWSLETTER AVAILABLE NOW!

Fully registered members can now access the latest newsletter in Resources/Publications.  Don't forget to login first!  If you'd like to become a member to access the latest newsletters, get in touch - it is FREE!

News Posted: 02/03/2010 | JUNE MEN PATIENT CONFERENCE IN TEXAS
The MD Anderson Cancer Center in Houston, Texas USA will be holding a FREE one-day MEN patient education conference from 8.30am to 3.15pm on Saturday 26th June, 2010.  The programme includes updates on genetic testing, PGD, paediatrics and treatments with specific breakout sessions on topics such pancreatic tumour, MTC and pheochromocytoma treatments.  For more information go to www.mdanderson.org/departments/ccg.  To re...

News Posted: 26/02/2010 | 1st VOLUNTEER INDUCTION DAY!
Sunday 7th March will be AMEND's first ever volunteer induction day at our new office in Tunbridge Wells.  If you are interested in volunteering for AMEND and would like more details, please contact us - we would be delighted to welcome you.  Any excuse for a free lunch!...

News Posted: 20/01/2010 | WE HAVE MOVED!

Due to AMEND's expansion, Jo Grey and Janet French, who live within 1/2 mile of one another, have amalgamated their home-based AMEND workspaces into one local rented office in Southborough, Kent.  The AMEND administrative office, one of many others in the friendly Southborough Centre in Draper Street, means that the two can take advantage of the synergies of working together in one place, as well as within a less isolated working environment.  The official opening on Febru...

News Posted: 13/09/2009 | Swine Flu Information for Patients Taking Hydrocortisone

The following is a link to the Society for Endocrinology's fact sheet giving Swine Flu advice for patients taking regular replacement hydrocortisone therapy:

http://www.endocrinology.org/news/article.aspx?articleid=1646

News Posted: 14/07/2009 | SWINE FLU - public information update
The UK Health Protection Agency public information leaflet on the current Swine 'Flu epidemic can be found in our resources section, accessed via the menu on the left of the screen.  AMEND would urge anyone taking lifelong medication to make arrangements with their GP for additional supplies of medication and to discuss arrangements in the event that Swine 'Flu is contracted....

News Posted: 31/05/2009 | MEN PASSPORTS LAUNCHED AT AGM DAY

We are delighted to announce that the long-awaited MEN Passports were launched at AMEND's AGM & Information day on Saturday 9th May 2009 in Exeter, Devon, UK.  The Filofax-type personal file, which comes complete with a jolly yellow AMEND pen, allows easy recording of information such as tests and their results, medication, treatment, scans, hospital appointments and discussions.  The reception from both patients and health professionals has been very positive and we are sure th...

News Posted: 04/05/2009 | AMEND SUPPORTS DNA TESTING OF PRESIDENT LINCOLN

PRESS STATEMENT 4 MAY 2009

Patient group, the Association for Multiple Endocrine Neoplasia Disorders (AMEND), which provides information and worldwide support to patients with the ra...

News Posted: 08/01/2009 | Advance Security Sponsor AMEND for 2009!
We are absolutely delighted to report that national UK security firm, Advance Security have offered AMEND their support during 2009.  AMEND was nominated by Louisa Hill, Marketing Co-ordinator, who's step-sister suffers from MEN, and the company has already donated £500 for including our logo on their 2008 customer Christmas e-cards.  We are looking forward to working with Advance Security (www.advancesecurity.co.uk) on other fundrai...

News Posted: 11/09/2008 | SURVEY ON UK INSURANCE INDUSTRY
The Genetic Interest Group (GIG) are conducting a survey of patients with genetic disorders regarding their interactions with the UK insurance industry.  If you have had good or bad experiences of applying for products such as Life, Travel or Critical Illness Insurance GIG would love to hear from you.  Contact Ben Francis at mail@gig.org.uk or ask AMEND for a questionnaire....

News Posted: 27/08/2008 | TCF-UK NEEDS YOUR HELP WITH MTC DATABASE

Thyroid Cancer Forum UK (TCF-UK) is a UK national organisation that facilitates communication between consultants and scientists working in the thyroid cancer field.  It is a free and independent service available to all senior clinicians and scientists involved in the treatment of these diseases.  It promotes awareness of recent advances in thyroid cancer management through the distribution of journal abstracts and national/international meeting details, as well as facilitating dis...

News Posted: 19/08/2008 | Clinical Trial Travel Assistance Fund

News Posted: 18/08/2008 | $8.5 MILLION FOR MEN2 MTC RESEARCH
On July 30th 2008, the American Cancer Society announced that it had received a gift of $8.5 million from a single annonymous donor.  The gift is to be targeted at establishing a MEN2 Thyroid Cancer Consortium comprising 12 outstanding young scientists, whose aim will be to undertake research in order to better understand the origins of MEN2 and thereby help in the fight against medullary thyroid cancer.  The American Cancer Society expects this group to be in place by July 2009.&...

News Posted: 16/07/2008 | AMEND LAUNCHES FUND FOR ENDOCRINE NURSES
AMEND are pleased to announce the launch of a new fund for endocrine nurses.  The Julia Dunn Fund aims to encourage UK-registered nurses to learn about multiple endocrine neoplasia disorders and/or the endocrine tumours associated with MEN.  Named after the late MEN1 patient, Julia Dunn and made possible by the Dunn Houghton Trust, the fund will pay registration fees for up to 3 nurses to attend the Society for Endocrinology's annual National Endocrine Nurses' Conference Residential Co...

News Posted: 13/06/2008 | GENETIC DATA BANNED FOR INSURERS
The use by insurance companies in the UK of genetic test results was banned under a moratorium due to expire in 2011.  Today that ban was extended to 2014, allowing people undergoing genetic testing to take out insurance without having to reveal the results of genetic tests (with the exception of Huntington's Disease).  The next review of the moratorium will be in 2011....

News Posted: 12/05/2008 | AMEND MEMBERSHIP NOW FREE!
At AMEND's Annual General Meeting on Saturday 10th May in Edinburgh, the membership voted to abolish membership fees!  Now, if you wish to become a member all you need do is to fill in the registration form (see 'Become a member'), adding a voluntary donation if you wish.  AMEND is keen to be as inclusive as possible and hopes that this will encourage many more members to join the 'family'.  Many thanks to the Mrs Waterhouse Charitable Trust and t...

News Posted: 12/05/2008 | AMEND AGM & Information Day Success
Over 40 attendees (both members and non-members) gathered at The Melting Pot in the centre of Edinburgh in Scotland for AMEND's Annual General Meeting and Information Day on Saturday 10th May.  This is the biggest attendance to date; the 'weekend away' option being popular with those who travelled some distance, and the location being equally popular with those who live in Scotland and the far North and who thus haven't been able to attend previous events in the South. ...

News Posted: 28/03/2008 | MEN2 Website Film Production
Production has started on our MEN2 website film (along the same lines as the MEN1 version currently showing on this site).  AMEND is looking for UK-based patients to volunteer to appear in the film (particularly those with MEN2b) to talk about their experiences.  If you think you would like to help, please contact AMEND for a no-obligation discussion about what the process will entail....

News Posted: 06/03/2008 | Family Route Map Launched
Yesterday (5th March) saw the official launch in London of the Family Route Maps: a joint project between 6 small charities (including AMEND) and the Genetic Interest Group, funded by the Jeans for Genes appeal and an unrestricted educational grant from Genzyme Therapeutics Ltd.  The 6 Route Maps, one for each condition, aim to help patients on their medical journeys by signposting sources of information and services currently available in the UK.  Those issues signposted include medic...

News Posted: 15/02/2008 | Eurordis Photo Competition - living with a rare disease

This competition is open to anyone having an interest in rare diseases in Europe, whether members of Eurordis or not. You have until 31 March 2008 to send your most beautiful, unusual, or artistic photos. Only digital photos are accepted. You can submit up to five photos.

Winning entries will be announced and exhibited at the Eurordis 2008 Membership Meeting in Copenhagen (16 and 17 May 2008) and posted on the Eurordis website. Prizes will be awarded to the best picture pe...

News Posted: 29/11/2007 | Did Former US President Lincoln Have MEN2b?

Read this fascinating article in the Washington Post from Monday 26th November regarding one doctor's theory that former US President Lincoln had MEN2b:

News Posted: 21/11/2007 | UK's Human Genetics Commission Wants Volunteers

The Human Genetics Commission are looking for new people to join their consultative panel. This panel is made up of those directly affected by a genetic condition (either themselves or a family member) and is used by the HGC as a sounding board for its reports and recommendations and is a great way for patients to influence the agenda of this highly influential Commission.

If you would like any further information you can look on the HGC website

News Posted: 26/09/2007 | Matisse Study: A Pilot Study in Metastatic Advanced Thyroid Cancer Evaluating the Safety & Efficacy of Sorafenib (UK Drug Trial)

We have the following news regarding this trial:

The Royal Marsden Hospital in London is recruiting for a trial for thyroid canc...

News Posted: 30/08/2007 | PETITION! UK GP premium rate calls

Some telephone companies are encouraging doctors in the UK to sign up for premium rate telephone numbers such as 0870 and other non-geographical higher-cost numbers.

If you wish to sign a petition in an attempt to stop this, please use the following link

http://petitions.pm.gov.uk/NGN-use-by-GPs/

News Posted: 13/08/2007 | 100 Mile Bike Ride for AMEND's Treasurer!

AMEND's supersonic treasurer is at it again - this time a 100 mile sponsored bike ride!  If you feel you could sponsor Sam, please see the link below:

News Posted: 13/08/2007 | SCUMBALL 2007 - an epic fundraising journey..
 

It's 1000 miles there and back, we're wearing shades, and we're in crap cars...

News Posted: 21/06/2007 | PGD Public Debate - London - July 16th 2007

PARENTS OR PARLIAMENT: embryo testing, who decides?

News Posted: 21/06/2007 | 5-Year Review of AMEND's Activities - Can you help?

Dear Members and Non-members,

We very much value the input of everyone who uses AMEND's services, and, given we have now been in official existence for 5 years, it would seem like a good time for a serious review of what we do, and what we have planned.  Please take a couple of minutes to download and fill in the following form:

http://www.amend.org.uk/files/2007%20MEMBERS%20QUESTIONNAIRE.pdf

News Posted: 06/06/2007 | PARTY TIME!
AMEND is one of 3 charities benefitting from the 2007 Fall Ball in Leeds, UK on Saturday 6th October.  An excellent night of food, music and boogeying is planned and tickets are just £35 per person.  This is our first big-time foray into fundraising, so be there or be square!  Please express your interest to Emily at emily.fazal@amend.org.uk...

News Posted: 06/06/2007 | AMEND 2007 YOUNG INVESTIGATOR AWARD WINNER
Dr Chrysanthia Leontiou from St Bartholomews Hospital in London was named as AMEND's first ever Young Investigator Award Winner at the British Endocrine Society Meeting in Birmingham in March.  Dr Leontiou (on the left of the picture) presented her research into the pituitary at the AMEND AGM in April where she received her medal.  Congratulations to Dr Leontiou!...

News Posted: 19/05/2007 | AGM & Information Afternoon - Another Success

AMEND held it's annual AGM and information afternoon on Saturday 12th May, 2007 in London, UK.  The numbers of attendees are increasing all the time, and this year 31 people were present which made for some lively conversation over tea and biscuits as well as an extremely varied and useful Q&A session with AMEND Trustee and Consultant Endocrine Surgeon, Mr Mark Lansdown from Leeds.

Attendees were able to view prototypes of the proposed AMEND 'Passport', a patient-held record ...

News Posted: 12/04/2007 | FALL BALL FUNDRAISER!

Put on your glad rags and get on your dancing shoes ready for THE social event of the year!!

News Posted: 18/02/2007 | MEN2 Seminar, Sydney Australia, 25th March 07

The Association of Genetic Support of Australasia Inc (AGSA) is holding a MEN2a and 2b Seminar on Sunday 25th March 2007 in Sydney, Australia. Anyone interested in attending should contact the following:

Dianne Petrie
Director

The Association of Genetic Support of Australasia Inc. (AGSA)
66 Albion Street
Surry Hills NSW 2010 Australia

+61 2 9211 1462

www.agsa-geneticsupport.org.au

News Posted: 18/02/2007 | MTC DRUG CHILDREN'S TRIAL

Many thanks to ThyCa for this exciting piece of news.  The trials are currently only scheduled to open in the USA and Canada.  If, as may happen, they branch out elsewhere, we will let you know.

From: Jan Halzel, PHD, Moderator of ThyCa MTC Listserv, January 31st, 2007:

'I'm very excited to be able to share the news of a new study soon to be opening for children under 18 years of age with either MEN2a or MEN2b. The study is scheduled to begin in three to four months, alt...

News Posted: 19/01/2007 | Triathlon Fund Raiser
Jo's dear old friend Caroline Beasley has decided to put her fitness training career to the test by entering the Taunton Deane Triathlon on Sunday 20th May 2007 to raise money for AMEND.  The discipline comprises a 400m swim, 40 mile cycle ride and a 3 mile run (my eyes are watering already!).  If you would like to sponsor Caroline, please contact Jo through the Contact Us page.  Good Luck Caroline!...

News Posted: 07/01/2007 | NEW PATIENT INFORMATION BOOK ON SPORADIC MTC!
Go to the Resources Section of this website to download the latest AMEND Patient Information Book on sporadic (non-genetic) medullary thyroid cancer (MTC).  Written with the help of AMEND's medical advisory team, the book describes in detail, current monitoring and treatment for patients living with MTC....

News Posted: 20/11/2006 | UK Review of Health & Social Care Information

Review of Health and Social care Information

News Posted: 25/09/2006 | Family Route Map Survey now online!
Get involved in this project funded by the Jeans for Genes Campaign.  AMEND and the Genetic Interest Group are working to produce a Family Route Map of services currently available to MEN patients in the UK's NHS, to help with that bewildering maze and to ensure that patients ask the right questions at the right times thereby receiving the right treatment!  Visit the following link: 

News Posted: 04/09/2006 | Your Experiences
We are currently developing the Resources Section to include directories containing free view articles and personal experiences. If you would like to share your story with others on this website, then please contact Jo Grey on jo.grey@amend.org.uk....

News Posted: 04/09/2006 | Voice Change after Thyroidectomy/Parathyroidectomy
Visit the Resources/Publications section of this website where you will find this adapted article from Newcastle University, UK, regarding their study into the affects of thyroidectomy and parathyroidectomy on the voice.  With thanks to the authors, particularly Pauline Meek....

News Posted: 19/05/2006 | 4th AGM See Changes in AMEND Committee
AMEND's 4th AGM was held in London, UK, on Saturday 6th May.  Attendees, who came from all across the UK and even from California, USA, not only participated in the AGM itself, but also had a chance to meet others and to have questions answered by Dr Steve Gilbey, Consultant Endocrinologist from St James's Hospital, Leeds, and Trustee of AMEND.  As Liz Dent and Emily Fazal had decided to step down as Chair and Secretary but remain on the committee, positions were elected as follow...