Jo Grey (AMEND CEO)
When I was (eventually) diagnosed with MEN2A in 2000, there was absolutely nothing out there for patients except the isolation of being diagnosed with a rare genetic condition. “It’s likely you’ll never meet another family like yours”, we were told.
How some things have changed! Now, through AMEND, which is 20 years old this year, newly diagnosed patients and families can meet others via Zoom, or at in-person Peer Support Meetings facilitated by trained patient volunteers. They can join in with our popular Annual Patient Information Day, or they can simply chat via one of our private social media groups.
Back in 2000, there were no patient information resources about MEN syndromes. All I had was a photocopy of a medical textbook article to help my husband and I decide when my son should have his prophylactic thyroidectomy. Now, not only can parents easily speak to other families who have made this decision, but our disease information resources include information on genetic testing in children, and appropriate preventative surgery. There are even resources for the children themselves, including our popular Marvel-style comic books and beautiful cartoons. As they grow older, our adolescents and young adults have access to their own resource section on our website that also includes films about living life with an MEN syndrome, and most recently, can join one of two age-appropriate WhatsApp chat groups, moderated by our trained Youth Volunteer, Sarah.
AMEND’s disease-scope has also expanded over the years and now includes familial paraganglioma syndromes, medullary thyroid cancer and adrenocortical cancer. Both PGL syndrome and ACC Groups now have their own identities (Phaeo Para Support UK and ACC Support UK respectively), along with dedicated websites and social medial channels and group. Specific information resources about the diseases and support services, including our Counselling Service are all available in the usual way for these patient communities too.
AMEND is also always happy to help our health professional colleagues, from participating in medical student training, lectures on patient perspectives to trainees or at conferences, or simply by being there in clinic to talk with patients. We took on the Phaeo Para Crisis Card resource developed by St Bart’s and made it available to order for all clinics with phaeochromocytoma patients. As many of you will know, if there’s a conference, we’re usually there! These are great ways of getting to meet health professional colleagues in person to discuss upcoming projects, as well as to spread the word about our resources and services for patients.
The Society for Endocrinology (SfE) has been a great source of help over the years, offering free exhibition space at British Endocrine Society (BES) and ENU conferences, patient group travel grants to help us get there, and most recently, patient group grants to help fund projects related to the provision of information resources to patients. Currently, we are part of a SfE patient committee looking at ways to raise the profile of endocrine conditions with primary care physicians. Affiliation with the SfE and medical advisors drawn from the SfE membership helps cement AMEND’s standing as a patient group of excellence for those with rare endocrine syndromes.
It’s safe to say that, in this, our 20th anniversary of registration as a charity in England and Wales, we can look back with huge pride at all we have achieved. And yet there is still so much more to do!
There are still delays in diagnosis that need to be addressed and so AMEND is working with the International Neuroendocrine Cancer Alliance (INCA), and medical societies including the Society for Endocrinology to address this over the coming years.
Behind the scenes are teams of volunteers, including our Trustee Board, who are currently setting AMEND’s strategy up to 2026. Our new Strategic Plan will highlight two themes for attention over the next few years: Sustainability and Awareness. AMEND will be looking at sustainability of both income and personnel. Awareness covers the need to raise awareness of AMEND and the diseases we cover to help aid earlier diagnosis. We are particularly keen to involve more Endocrine Nurses in helping us spread the word and are always happy to hear your thoughts and suggestions, as well as to have you involved in any of our projects.
This year, we are starting work on two new projects; our Rare Endocrine Tumours & Syndromes smartphone App (RETS App) which will replace our MEN Passports as a repository for patients’ personal information regarding their disease and its management, and the development of a resource for GPs about each of the diseases we cover (MEN and PGL syndromes, ACC and MTC). We hope that this resource, that will be distributed by existing patients to their GPs, will highlight what areas of management can be achieved locally, as well as raise awareness of signs and symptoms of recurrence, or of the disease in general. Taken together with other projects with the SfE and by organisations bigger than ours, we hope that the average time to diagnosis of patients with rare endocrine tumours and syndromes will improve.
While we celebrate our successes of the past 20 years throughout 2023, we look to the next 20 years with both positivity and realism. A new CEO will be needed from 2026 to bring the skills and energy necessary to take AMEND into the future. Perhaps my successor will come from the Endocrine Nursing field! Whoever it may be, they will love working for this small but big-hearted charity.
Visit AMEND’s website to learn more about the incredible support work the charity has managed over the past two decades.