The latest AMEND newsletter is now available for members to read.
This quarter we say 'au revoir' to Janet, who retires after 10 long years of dedicated volunteering for AMEND; there is news of an All Members' Meeting in October to vote on the future structure of our charity; an update on Project Superhero!; some Research Registry opportunities for patients, and a whole lot more!
Please log in and visit this webpage where you will be able to view all the latest news.
AMEND had a 10-strong team this year at the annual British 10k London Run on Sunday 14th July. This was our biggest team yet, despite two runners not being well enough on the day to participate.
Temperatures on Sunday soared to 30 degrees celsius making running pretty uncomfortable, but they all romped home in the end, some still running, others staggering!
A massive thank you to the whole team, who so far, have collectively raised over £3100 / $4700 for AMEND, with more to come.
We are delighted to be able to report that, as of Monday June 24th, the AMEND Counselling Service has been relaunched with new Counsellor, Kym Winter, at the helm. Kym has over 15 years of experience in this field. She takes over from previous long-standing Counsellor, Karen Langrick, who had to step down from the role earlier this year for personal reasons.
The AMEND Counselling Service is available for fully registered patient members of AMEND and offers FREE and confidential telephone sessions together with assistance to access face-to-face counselling in your local area if appropriate. Pre-bookable face-to-face counselling with Kym will also be available at occasional AMEND events or Annual Patient Information Days.
AMEND patient members who are outside of the UK should email Kym and arrange sessions in advance. Please bear time differences in mind.
Read more about the service and about Kym here.
A fully updated 3rd edition of AMEND's popular Patient Information Book on Multiple Endocrine Neoplasia Type 1 (MEN1) for UK patients is now available to download for FREE from this website. This follows hot on the heels of the recent launch of the 1st edition of our American adaptation of this book, which can be found using the same link.
No MEN1 patient or family member should be without this incredibly useful easy-to-read reference tool which now contains additional information on signs and symptoms of hypercalcaemia (high calcium) caused by parathyroid hyperplasia as well as hypocalcaemia (low calcium) after parathyroidectomy. We recommend that these essential books are also given to family doctors / GPs for their records.
Huge thanks as always to our wonderful Medical Advisors for their help in updating this book.
Registered members of AMEND may now log in to access the latest newsletter here on this website.
This quarter we say a very sad goodbye to the lovely Margaret Francis whom many of you knew.
There is news of our 2013 Research Award, other opportunities for getting involved in research, and a full update on the 2013 Annual Patient Information Day.
And as usual, there is much, much more
We are pleased to announce that the winner of the 2013 AMEND Research Fund Award is Kate Lines, BSc (Hons) PhD from Oxford University for her proposed project, Occurrence of microRNAs in the plasma of MEN1 patients and their feasibility as biomarkers'.
Congratulations to Kate (pictured) who begins her project in September 2013 and who receives £9,994.
To read more about Kate's project, please follow this link.
To read more about AMEND's annual Research Fund Award and previous winners, please follow this link.
Research is currently underway in the UK to investigate how to support families affected or at risk from inherited genetic conditions like MEN or SDH. This is a perfect complement to AMEND’s current work to produce information resources for children, ‘Project Superhero!’.
Kings College London, Manchester University and Cardiff University are working together with clinicians to develop interventions that will support families to communicate more effectively with their children (<18 years) about the genetic condition affecting the family and its risks.
They want to work together with parents, children and young people and would love to hear from you if you would like to work with them in developing family focused research and interventions to improve care and inform service delivery. There are lots of different ways to get involved from taking part in different aspects of the research to informing its development.