By Anne Child MD FRCP, Medical Director of Marfan Trust, Honorary Consultant RBHT, on behalf of the Chair, Trustees, Medical and Scientific Staff of the Marfan Trust
We sadly have to report the recent death of Dr. Michael Carr BSc (Hons), PhD, Cert.Ed, CBiol, MIBiol, former Chair of the Marfan Trust on 14th February 2020. Dr Carr was a much admired and appreciated long serving Chair of the Marfan Trust Charity, at a critical time in its development. His specialist training in academic inspection (Ofsted) equipped him for this leadership role as the Trust expanded into a new research programme, hiring staff for laboratory Molecular Genetics which characterised the normal fibrillin protein structure, and its mutations in over 500 UK patients. All results were published and contributed to the international gene map held in Paris.
During his tenure, six PhD students and 15 Bsc/MSc Students graduated successfully, after making Marfan syndrome and related conditions their thesis subjects. He encouraged publication, and was especially proud to hear in the week before his death, of the successful completion and publication of the AIMS trial (a national drug trial of Irbesartan), which was proven to be a new effective treatment, delaying aortic expansion, and extending the life span of the 1 in 3000 population worldwide affected by Marfan syndrome. This six-year study was co-funded by British Heart Foundation, Marfan Trust and Marfan Association.
Michael’s own diagnosis came late in life, and he was very forthcoming in presenting how it affected him and his family, lecturing to patient and medical audiences. He contributed his talk at the Royal Society of Medicine to our website.
Always cheerful, inspiring and optimistic, he encouraged all aspects of Marfan Trust activity: Research, Education and patient support, and has left the Trust truly established as the voice of 3000 UK families. He gave his support wholeheartedly to Trustee Michael Heath who has succeeded him as Chair.
All Trustees and staff will miss him greatly, but his legacy will live on as we amalgamate with our sister organisation, the Marfan Association, and spearhead continued growth of research and support.
Help raise funds for the Marfan Trust in honour of Michael Carr by donating to, or participating in, his step son's London to Brighton Cycle Ride in September 2020.