Our world remains in retreat. Streets stand silent. Offices sit still. Schools are shuttered. Shared spaces are empty spaces. Modern Life has shut down. But the galaxy continues to spin. And the human need to connect prevails. With the communal confined to the virtual, social gatherings proliferate digitally as birthdays continue to be marked and friendships defy 'distancing' to be forged. 

The home becomes the office as equipment is bought and skills are acquired.  And behind the scenes at Marfan Trust HQ we may be scattered and isolated across the country, but we have united as a committed digital whole to continue our service to you, the Marfan family. Our team members, new and old, volunteers and permanent, are adapting to this strange parallel existence and would like to give you an intimate insight into our house-bound working worlds:


Fresh from the City Trading Floor, Natalie joined the Marfan Trust last November, working two days a week. She kept everything afloat and flowing during the busy, exciting transition from St George’s University to the Guy Scadding Building beside the Brompton Hospital. Natalie continues to volunteer but at a safe distance, and is Anne’s portal to the outside world, helping her navigate the perils and pitfalls of technology. Here’s Natalie maintaining a healthy balance of work and play.


Cardiovascular Geneticist Dr Anne Child confidently traverses the complex lexicon of gene mapping and aortic testing but is less secure navigating the more modern-day communication channel of computerese. With Natalie as Chief Technical Advisor she is conquering the language and getting acquainted with her computer through which she speaks to supporters and continues the essential research into Marfan syndrome. All this as she overlooks her luscious garden as it blossoms into spring. And at night she listens to the sounds of Bach.


New to the team, Victoria was settling into the office, monitoring the increasingly busy helpline before working life as we know it came to an abrupt end. From home, she projects Dr Child’s voice to the public, typing digital dictation while devising newsletter stories, social media titbits and answering you, the public. But by night she sinks into her celluloid dreams, exploiting isolation to complete her expansive DVD collection.


Veteran marketeer and Organisational Guru, Moira works one day a week for the Marfan Trust. Representing continuity in the Administrative and Fundraising Team, Moira is the central hub for her more recent colleagues, orchestrating remote access and steering new team members to the correct files and folders. She is using this new normal - WFH - to concentrate properly on redesigning our website taking it to exciting new digital heights. By night she projects her voice to the public in a virtual choir in between walking her beloved, and sometimes smelly, dog Stan. 


Brimming with ideas, Gurpreet joined the Trust just five weeks ago and has yet to work with us in person. Resolutely undeterred, Gurpreet has countered physical separation with a virtual office - one in which our team members can exchange ideas and chat as freely as before. And she is expanding our community to you our supporters, igniting Facebook and Social Media, digital hubs that that keep us all connected. By night she cooks up a storm and challenges anyone to survive her heat test.


Our resident boffin, José wrote at the outset of lockdown, reassuring you that the laboratory continues uninterrupted. While WFH, José feels liberated from administrative encumbrances, focusing unimpeded on his statistical analysis and studying computer programs. By night he enters a maze of puzzles and jigsaws.

Marfan Trust, a CIO registered as a charity in England in Wales with charity number 1198847 at: c/o 24 Oakfield Lane, Keston, Kent, BR2 6BY. Contact us at [email protected] or by phone on + 44 (0)333 011 5256
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