Trustees Report Spring 2019

Although 2019 finds our Chairman Dr Michael Carr unfortunately indisposed, it is business as usual for the Trust and the Trustees. 

The Trustees’ recent decision to extend the purpose of the Charity to ‘Supporting Research into Inherited Aortic and Related Disorders’ reflects on the success of the Charity. We are also mindful of the huge personal contribution of Dr. Anne Child, arguably the main driver of the Trust which together with her previous Marfan patient practice is her life’s work. The Trust now operates: The Sonalee Laboratory under the Directorship of Dr. José Aragon Martin, Provides a Helpline, publishes Newsletters and pamphlets and organises events through a small team of employed and volunteer staff. It also runs a website, www.marfantrust.org as well as social media pages. These achievements are succinctly listed in this newsletter. While Dr. Child will continue to serve the Trust, we must look at the future role of a Medical Director within our set up, and strengthen our core of trustees to provide collective responsibility, with the help of our Advisory Panel.

The principle strands for the Marfan Trust: Research, Education and Support identified by the founders remain today as relevant as ever and the work of the Trust needs to continue. I believe that our current set up as an independent professional ‘niche’ charity strongly supported by patient involvement sited within St George’s University of London remains viable. But these are challenging times for Funded and Grant dependent organisations and we need to be prepared. This is why your donations and fantastic fundraising activities are so valuable to the Trust.

In celebrating over thirty years we recognise that we are at a point to decide how to take the Trust forward. To be best informed for this we are: actively engaging in recruiting new Trustees, enlarging an ‘Advisory Group’ to assist the Charity. We are looking how we can improve: our communication with you our supporters and facilitate those fundraising activities. We can do this by building and welcoming new people into the family that is The Marfan Trust to share our ideas and work together to ensure the Trust has a bright future.

Our immediate objectives are to:

• Secure funding for José, his team and the Sonalee laboratory;
• Review and update our website and other social media platforms;
• Continue with the present administrative support for the provision of the Helpline, again funding is required; and to
• Deliver a Marfan Information Day on Saturday 12 October (put it in your diary!)
• Increase our supporter base with new members

These will probably not change too much for the longer term and might be: build on the successes of the Sonalee Laboratory in research excellence; establish a secure professional home for the Helpline; build financial reserves and continue to deliver an effective Support and Education programme for the UK.     

The Trustees value your comments and welcome your involvement. Feel free to email [email protected]. 

Best Wishes

Michael Heath, Acting Chair