With heavy heart, the Trust announces the death of Diane Rust on Friday, 14 October. Diane was the irrepressible founder of the Marfan Association which became the lifeline for many Marfan folk. She and her team provided support when there was none, and raised awareness of our condition when it was so little known. Diane’s legacy is indelible.

by Val Greatorex and Dr Anne Child

A remarkable woman, who achieved a tremendous amount. We all owe her a debt of gratitude. Working with her as a Trustee for the Marfan Association since the early days, her drive and determination to make Marfan Syndrome (MFS) better known to the outside world, including the medical profession, was infectious. She encouraged us to give our all, yet we could never match the effort and enthusiasm she personally gave towards it.

Diane worked tirelessly in supporting those with the condition and their families, as well as conveying the importance of early diagnosis and treatment by the medical profession. A network of support was set up around the country and telephone help was always available. Research into MFS was a high priority and fundraising enabled many aspects to be explored.

Our gratitude to Diane is immeasurable and her legacy will be that the words MARFAN SYNDROME are now in capital letters in the consultant’s Bible.

‘TOGETHER WE CAN’ was Dianne’s slogan, and she was right; the proof is that her work is being admirably continued by THE MARFAN TRUST

by Dr Nitha Naqvi

Diane was a truly special inspiring dynamic woman. She was a magnificent advocate, totally committed to making the lives of those affected by Marfan syndrome better. Each time I met Diane, I was always struck by her wish to do whatever she could to support healthcare professionals to work with Marfan syndrome. Diane gave enormous support to families for so many years. Her knowledge of the medical aspects of Marfan Syndrome was impressive and she enjoyed interacting with expert speakers and the audience at medical lectures on the condition. We loved having Diane with us at our education days in Chelsea. She taught doctors and nurses about the patient’s perspective. Her warm smile was infectious, and Diane always lit up the room with kindness and warmth. She will be missed by so many. Rest in peace Diane.

[Diane pictured in Paris. She took our cause around the world]

In Loving Memory

Diane Rust

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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