A Word from the Trustees

It was our late Chair Michael Carr who introduced me to the Board and gently eased me into becoming a trustee. Although illness had prevented him from being active with the Marfan Trust in recent years, in addition to his contribution for which we thank him in this publication, he did leave for me a prescient insight into the future of the Trust. This has assisted me to bring, with my fellow Trustees and our Medical Director, to where we are today.  This position is what I want to explain here using a series of Thanks. 

However, writing this during the rapidly unfolding COVID-19 pandemic and not knowing when you are likely to read this, I find that Dr Anne Child, Dr José Aragon-Martin together with Moira Taylor and our brand new staff members Victoria Hilton and Gurpreet Madan have successfully moved to working from home to respond to the increasing virus related enquiries we’re receiving and currently remain available to you. The Trustees met virtually in early in April and The Marfan Trust will ensure that we remain in contact with you (look out for regular e-mail and social media updates), that we are effective and sustainable during the crisis, and will be ready for when things look up with a return to a normality, when the charity will again work with you all to fully deliver our Mission and Objectives. So do follow the advice, keep well and please read on.   
 
That first of my thanks is to Trustees of the Marfan Association who have graciously worked for a smooth merger with the Trust. This support and transfer of funds brings a boost and opportunities for the Trust, now the only independent body for Marfan syndrome in the UK. A responsibility that I and our Trustees are all too mindful of.  
 
The move to the Guy Scadding Building in South Kensington has not been without many logistical challenges. Dr Child has been brilliantly supported by Moira, volunteer Natalie Ryder and others who have given their time and experience to bring about this transfer. We all probably have an idea about the issues in moving an administrative department which has included some legal expenses, but what about a research programme as comprehensive as the Sonalee Laboratory (the Lab)? The ethical transfer of data and samples is complicated and expensive and this has taken up all Dr José Argon-Martin’s capacity as the Research Director. But the Lab should soon be up and running and again making a mark in our sphere of medical research. Well done José! We look forward to funding new research projects.
 
My final thank you here is to you our uncomplaining supporters who must have wondered “what is going on?”. With the move and merger complete and new staff in post, we will now get back to some positive engagement with you. That should be timely acknowledgements of donations or support with your fundraising activities. The pending upgrade to our website with enhanced links to our recently reengineered social media platforms will make also us more visible and assessable. 
 
The Marfan Trust is arguably a niche Charity which will now “pack a bigger punch”. We will start this with the introduction of a membership scheme later in the year; a modernised version of that of the Marfan Association. As members you officially become a part of our family. For the Trust, a healthy membership becomes the foundation for its supporters and help us to take our work forward.  
 
In October we are planning to reconvene our Marfan Information Day, an open event to meet up and find out what is happening in our world of Marfan syndrome and related disorders, details of the day and how to become a member are in this newsletter. See page [Insert page no].
 
I look forward to meeting many of you or hearing that you are now members later in the year.
 
Please do e-mail the Trust at [email protected] or use our social media pages to contact us with your comments on my article and the newsletter. 
 
Best Wishes 
Michael