2019 was a year of unprecedented change for the Marfan Trust. The Trust moved locations to the NHLI at the Guy Scadding Building at Imperial College with the Laboratory moving to the Brompton Hospital, located behind one another in South Kensington, from St. George’s University in Tooting. At the same time, we lost our permanent and acting office team members due to health and personal issues. Fortunately, we retained the help of our Strategic Marketing Consultant, Moira Taylor plus volunteers Natalie Ryder and Cecilia Yee and were therefore able to keep continuity going at the Trust, albeit on a reduced basis. 

Victoria Hilton

Since February 2020, we’re delighted to announce that Victoria Hilton and Gurpreet Madan have joined the Trust as full time staff members. Victoria as the Trust’s Administrator and Gurpreet as its new Fundraising Manager. Both have significant experience: Victoria has many years of experience as a PA and administrator, having been co-ordinator for the busy IVF unit at St. Thomas’ Hospital for 2 years - a that post required great empathy and tact; while Gurpreet (pictured above) has over 6 years of fundraising experience in Singapore and the UK, having worked at St Luke’s Hospice, KIDS and Birmingham Hippodrome, among others.  Please join us in welcoming them to the Marfan Trust.

Volunteers – Thank You! 
In the past six months we have had magnificent help from two volunteers: 

Natalie Rider

Natalie Rider
Natalie, an administrator in the investment world, was between jobs, and on garden leave which means her firm was paying her to the end of her contract. She volunteered to help with our Charity, because she wanted to feel she was doing some good for people with a medical condition. Because of her excellent knowledge of Microsoft software and PC’s in general, she has provided vital support to all our staff. She has volunteered cheerfully to update the addresses on all our pamphlets brought from St George’s University of London, or donated by the Marfan Association. We have used donations to purchase new address stickers for our present address at SW3 6LY, so as not to waste any leaflets. 
Natalie has also helped us bank cheques, and mail out fundraising packs and items from our web shop. There is no charge for fundraising packs, although we would ask that people give us lots of time to send these out prior to the event.

Cecilia Yee and Family

Cecilia Yee
Cecilia is a parent of a son with Marfan syndrome who is now at university, and doing very well. She donated a half day per week to come into the office and help with recording donations, thanking each donor, and also putting stickers on pamphlets. When she was free, her daughter Ellen Yee accompanied her and added a youthful presence and some very hard work, to our group. We are very grateful to both of them for their continued assistance.
Huge thanks to both Natalie and Cecilia who continue to support us. 
Anyone wishing to volunteer could either email us at [email protected] or call on 020 7595 1605. We would be very glad of any offered part-time assistance. 


The Marfan Trust is registered in England and Wales under charity number 328070 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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