Embracing the digital age and ensuring our supporters have accurate and up-to-date information and advice has been paramount to us.


We focused on resurrecting our social media and creating educational content for our supporters, which have all been very well received.

“I would like to thank the Marfan Trust for the regular emails, especially during the lockdown. They are very informative and explain a lot of conditions that I and some other members of my immediate family had that were totally is missed as being unconnected with Marfan’s.”  Quote from a supporter

A lot of time and energy went into creating an exceptional conference for all to enjoy. 91 supporters attended and raised an amazing £995. The income generated is being use to provide support, research and educational literature to those affected by Marfan syndrome. A big thank you to all the attendees for purchasing a ticket and making the conference a success.

“Thank you to all the speakers and organisers who made this day possible. It was most informative and good to hear so many varied experiences and questions from the attendees. Thank you. You all deserve a well-earned rest”.  Quote from a supporter

Although many supporter fundraising events had to be cancelled, we’ve had some wonderful supporters who planned their own bikes rides and runs for the Trust (more details are shared in this newsletter) for which we are truly very grateful.  The support, love, feedback, shares that we have received over the last few months is what motivates us to deliver better services and support.


We have events coming up this year and could really do with your support:

Act Now, Save A Life Campaign (running from 29 Oct to 11 Dec)
The Sonalee lab relocation has prompted the Marfan Trust to launch an appeal for £5,000. As the sole UK charity funding its own medical research projects to aid the diagnosis and treatment of Marfan syndrome, we hope you are able to support us [see our social media pages and website for more, and overleaf for ].

Silent Auction (launched on 17 Nov and to end on 11 Dec)
Still thinking about those Christmas gifts and wondering how you will purchase them during the lockdown, well fret not! Marfan Trust has got you covered. Please keep a look out for your emails, our website and social media to join in our Silent Auction.

A massive Thank You to those that donated Auction Prizes. Your support is crucial in helping us bridge the financial gap that has materialised due to Coronavirus.  [see website and social media pages].


Other ways to support us:

Keep things interesting and entertaining by setting up a Fundraiser
Some ideas: a binge of your least favourite TV show, a live stream of you cooking a family recipe, sharing a unique skill that you might have like yoga, dance, arts and crafts. Be creative and get in touch for more ideas! 

Endorsement
You can support us by tapping into your network and recommending us to your Company as their Charity of the Year partner; or why not speak to your child’s school about fundraising for us. With your support, we could make a massive difference to the lives of those affected by Marfan syndrome and their families.

Help us spread the word
Post on your social media accounts with the hashtag #MarfanTrust or alternatively send stories/videos of how Marfan Trust has helped you to [email protected]

And don’t forget feel-good shopping: Shop at smile.amazon.co.uk and donate to your Marfan Trust, at no cost to you. Get started!


The Marfan Trust is registered in England and Wales under charity number 328070 at Guy Scadding Building, Dovehouse Street, London SW3 6LY. Contact us at [email protected] or by phone on + 44 (0)20 7594 1605
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