‘Remote’ Insight from our Chair
The Trust will be working with and for you, as we all get through this winter, the pandemic and look forward to more comfortable times
As this extraordinary year rumbles on to its conclusion much talk is about family at Christmas. We at the Marfan Trust (the ‘Trust’) have been thinking a lot about the Marfan family. The team whilst working from home have continued to deliver and develop the Trust; three examples being Dr Child’s weekly Casebook, ad hoc articles and our outstanding first ever virtual Information Day - highly attended and well received. It was great to see so many and meet some of you.
How the Trust extends this connection with you and provides the right support is crucial to our future.
It was my first conference as Chair of the Trust, and as I said on the day I’m humbled to continue my predecessor Michael Carr’s work. Michael saw the Trust through many momentous changes, some of these physical, most significantly our move to Imperial College alongside the Royal Brompton Hospital. The Brompton has generously provided a new home for our research laboratory at the Guy Scadding Building which is slowly filling with cutting-edge new equipment – exciting tools for our resident scientist José Aragon-Martin. While COVID has left the nation in suspended animation, it has not interrupted our work. In fact, it has only served to drive and propel people to our Helpline – now a Lifeline for many of you. With Dr Child at the other end dispensing not only medical expertise but also moral support, we at the Trust are the first port of call, building our community of like-minded Marfan folk. This is reflected in our new and burgeoning social media sites managed by our new members of staff who have created a hub of information delivered in an accessible style which is attracting more and more of you daily. This online presence helps to spread the word, enlightening and educating the wider world of our niche syndrome. And it expands upon your work, you being our busy supporters, you who heighten awareness not just through discussing the syndrome on your forums and blogsites but in your fundraising efforts for us and this is truly indispensable to us as a charity. We are very, very grateful to you.
An unusual condition, Marfan syndrome has an unusually dedicated ‘champion’ in Dr Anne Child, Medical Director of the Trust. I started on the theme of firsts and will conclude on this very note. It was Dr Child who first organised the international consortium which together located the gene that causes our condition, by tenaciously travelling far and wide collecting blood samples, perhaps from some of you, or your parents if not your grandparents, in her quest to find the cause of Marfan syndrome. That was some 32 ago and her zeal to improve and prolong our lives remains undimmed. From research projects on the boil such as Ectopia Lentis that will help uncover the genes for dislocated lenses, to our life-saving hunt for the missing 15,000 – that is those predicted to be living in this country [more on this later], many unknowingly with Marfan syndrome, the Trust continues, temporarily displaced, but always unstoppable.
The Trust will be working with and for you, as we all get through this winter, the pandemic and look forward to more comfortable times. Be reassured the Marfan Trust continues to: support the Marfan Family, deliver an innovative research programme, and heighten awareness amongst public and medics alike of our unique condition.
Best wishes for 2021 …. Michael
