Message from Sven Moos, Chair of Trustees

2017 was a year of significant change for the AAT, its supporters and benefactors. Firstly, I would like to give my thanks and that of the trustees to Anna Martin, long-standing Executive Director of the AAT who stepped down in spring 2017 to pursue her career elsewhere. We wish her well and every success in her new role.

Nick Fisher, who has been an unwavering and generous supporter of the AAT for many, many years stood down as trustee in spring 2017. The trustees would like to thank Nick for his service and his generous and ongoing contributions to the AAT as trustee and as a volunteer contributor to the organisation. While we lose Nick as a trustee, we hope to be able to continue to count on Nick as a volunteer and supporter.

Professor Edward Gordon-Smith has stepped down as Chair of the AAT. I don’t know where to begin with my thanks. Ted was a founder trustee of the AAT’s precursor charity, the Marrow Environment Fund, some three decades ago. He has been a trustee for all that time, unwaveringly dedicating not only his professional career at St. George’s Hospital to fighting aplastic anaemia and associated bone marrow failure diseases, but also generously devoting his own time and efforts to fundraising, helping, explaining, caring and being there for all those who are afflicted and affected. His unparalleled personal commitment and wholeheartedness can only serve as an example to us all. Ted remains as trustee, for which we are hugely grateful. I know, that I speak for all of us at the AAT, when I say that without Ted the AAT would not be here today and we all owe a deep debt of gratitude to him for his dedication and support. Thank you!

Special thanks go also to Heather Wood and Bryony Partridge. Heather has been enormously generous in supporting the trustees with her vast experience in charity administration. She has helped to steer us through the increased complexity and legislation as it affects the AAT as well as being instrumental in finding our new CEO and supporting the board in so many ways. Thank you, Heather! Bryony, our AAT Patient Support Group Coordinator has played a key role in ensuring that the AAT maintained its operations after Anna’s departure and has done a great job in taking on additional tasks to ensure that both the trust and PSG were able to continue to function as well as they did.

New trustees have joined the board. We welcomed Professor Ghulam Mufti and Professor Judith Marsh to the board of trustees in 2017. Ghulam is Head of the Department of Haematological Medicine at Guy’s, King’s and St Thomas’s hospitals, King’s College London, with a team of 13 professors, 6 senior lecturers/lecturers and approximately 100 research staff. He is the Clinical Director of Laboratories Sciences and a non-executive director of King’s College Hospital NHS Foundation Trust. Judith, of course, re-joins the trust’s board after a three-year break from the role after originally being one of the very long-standing trustees of the AAT. Judith is a Professor of Clinical Haematology and Consultant Haematologist with specialist interest in aplastic anaemia disorders, chairs the writing board for British Committee for Standards in Haematology, is Chairman of the European Blood and Marrow Transplant (EBMT) Severe Aplastic Anaemia Working Party and a member of the CIBMTR for International Affairs. We count ourselves enormously fortunate and honoured to be able to welcome two such eminent clinicians to the board of trustees. Welcome (back), Judith and Ghulam!

Three further trustees joined the board: Paul Cossell, Elaine Hanham and I. Paul is a long-standing supporter of the AAT and also rejoins as a trustee after an original tenure from 2007-2014. He is chief executive of one of the leading construction companies in the UK, bringing a breadth and depth of experience, business acumen, dedication and fund-raising talent to the trust for which other charities can only envy us. Elaine joins us as treasurer with the experience of a long accounting career and a sharp eye for the financially feasible and the prudently possible. Lastly, I have also re-joined as a trustee in 2017 after an original tenure from 2007-2014. All new, non-clinician trustees have joined as we have been affected by aplastic anaemia in some way, either as friends or family are patients or because we have been affected ourselves. I am honoured also to have been chosen by the board of trustees to be Chair of the AAT to succeed Ted in that role. We will continue to appoint trustees in order to help us in key areas which still need development, such as rejuvenating our social media and web appearance and communication and will implement a trustee rotation principle to ensure that we remain both agile as a team as well as having key skills in the group as they are required.

This brings me to one of the most important developments for the AAT. I am delighted to announce the appointment of our new Chief Executive Officer, Grazina Berry. Grazina joins us from Richmond Fellowship/Recover Focus Group, a national mental health and substance abuse services charity, where she was Group Director of Performance, Quality and Innovation. Grazina will be instrumental in the formulation and execution of our new strategy to take us to 2020 and beyond as well as bringing new impetus and initiative to our fund-raising efforts. Grazina will lead the efforts to take the AAT to new heights and to ensure that we are able to re-double our efforts to fund important research into fighting AA as well as providing support to patients. She started her role at the beginning of January 2018 and is off to a roaring start already. Welcome, Grazina!

The trustees will work closely with Grazina to support her in her role. However, we will be appealing to all our volunteer supporters to come forward to help us in our efforts. As a trust we can do so much more if we are able to put more shoulders to the wheel with the help of our friends and supporters. Please sign up to our Facebook Group. Please support our events nation-wide. Please volunteer for local fund-raisers. Please involve your friends and family in the AAT’s cause. We will approach you all over the coming months to ask for your help and support.

We have also continued our work and have pleasing updates on our achievements:

  • We have continued to fund Nana Benson-Quarm’s role as a clinical nurse specialist to co-ordinate vital care and enable patients to participate in clinical trials. Nearly 400 patients supported since the start of our funding programme in 2009. Nana will report separately in this issue, which will sadly also be her farewell message as she is moving on to another role at King’s and we wish Nana well in her new role.
  • An AA/BMF registry at KCH has been established, enabling the study of epidemiology and planning services for the future. Nearly 500 patients were recruited, with a confirmed or suspected diagnosis of AA, of whom 43% have acquired AA, with 110 people diagnosed with either severe or very severe AA. A surprising finding was identified of higher than expected incidence of inherited AA. The study has enabled a joined project with the National Institute of Health (NIH), USA to produce the largest study of inherited heterozygous mutations in patients with AA and MDS, (published in Blood Advances, 2017).

I have said that 2017 was a year of change for the AAT and the account above bears testament to that. Our focus, however, will remain immutable: We will do everything we can to help eradicate Aplastic Anaemia and associated bone marrow failure diseases and to help patients and their families and loved ones with support and advice. Please continue in your fantastic support of the AAT and help us to maintain that focus.