Trustees' Message

Nestling among the medical research institutes that surround the Royal Brompton Hospital in Chelsea is the Guy Scadding Building, the new home of the Marfan Trust; my first visit found Dr. Child happy in her new office.

Arriving this autumnal day I reflected that Dr Child’s Marfan Trust, our small niche charity, had in 2019 dealt with some significant issues: Relocation, negotiating a merger with the Marfan Association and recruiting new staff. All this has understandably presented logistical challenges for the staff. I am grateful to and thank all those who have worked tirelessly to meet and make these changes happen. Our special thanks go to Professor John Pepper and the Brompton Hospital staff, as well as Dr. Gareth Hyde and colleagues who have welcomed us to the Guy Scadding Instititute.
 
This institution will also host Dr Jose Aragon Martin and the Sonalee Laboratory and he will continue his many years of commitment to this the Research arm of the Trust. 
 
I am mindful of the impact that all this has been having on the Trust’s capacity to keep in touch with you all. The Marfan Trust is and remains reliant upon you our supporters and fundraisers and we thank you for your donations. It is these which are enabling us to: meet our ongoing and new core costs, to continue our Research Programme and to maintain our help line and other support functions as now the only Marfan Support Organisation in the UK.  
 
Once settled we will once again keep in regular touch with you all. Next year we plan a Supporters Day in London, followed by a return to taking the Trust away to regional centres for support days. Our improving capacity will enhance the way we communicate with you and our promotion of the Charity.   
 
At the end of my visit there was autumn sunshine and I felt a reassurance that the Marfan Trust is now very well placed to build on its successes. Dr Child and her Team are in a position of strength which is further supported by a Board of Trustees, equally committed to securing the long term legacy of the Trust. 
 
I look forward to working with you all to achieve our mission and values. In particular the Trustees recognise that as well as our Core Aims: Research, Education and Support, the charity must engage with and support young people affected by Marfan syndrome, so that they may be best placed to meet the challenges their generation will face.  
 
I believe and am thrilled that with this edition of our newsletter, you will also find that the future is very bright for the Marfan Trust.   
 
Best Wishes
Michael Heath, Acting Chair, Marfan Trust