Keep up to date with the work of the Marfan Trust charity

Jun 19, 2019

Janet Gomes on Extended Leave - Response Times are Slow

Our lovely fundraiser and administrator, Janet Gomes, unexpectedly had to take Leave of Absence in May due to serious family illness. We're not sure when she will be back at present so we are managing as best we can. As a result our response times to your queries, donations etc. may…
Jun 19, 2019

Please Register if You're New to the Marfan Trust

If you're new to the Marfan Trust, then please go ahead and register with us. We'd love to have you on board! Simply click here to register your…
Jun 12, 2019

Invitation to Marfan Association Supporters

Unfortunately, the Marfan Association UK, with whom we have worked closely for years, is closing down on 30th June 2019. The Charity Commission is appointing three new trustees for the Marfan Association to wind up its accounts. The Marfan Trust is happy to continue the work of…
May 7, 2019

Fatigue and Depression in Marfan Syndrome

By Dr. Anne Chld MD FRCP. Recently a 44yr old man with Marfan syndrome rang for advice as he was so tired at work, that he was falling asleep at his desk and in danger of being fired from his position.  General advice in this situation, which…
May 1, 2019

Supporter Achievements - Dan Hyde

Congratulations to Dan Hyde on the great achievement of being appointed as Director of Music at King’s College, Cambridge from 1 October 2019. We wish Dan huge success in his new role.  “I am very pleased…
May 1, 2019

Helpline Summary

By Annette Ribeiro, Helpline Adminstrator. In the past 12 months the helpline has assisted a total of 121 people. Of these, 90 were received by email, and 31 by telephone.  Advice was given to all, and for 42 enquirers, specific advice was provided…