Annabelle’s Challenge are Community Champions

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• 1 March, 2022


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• Community Champions

Annabelle’s Challenge was founded in 2012 by Jared and Sarah Griffin after their daughter Annabelle was diagnosed with vascular Ehlers-Danlos syndrome at the age of 3.   Vascular EDS (vEDS) is a rare type of the Ehlers-Danlos syndromes which puts patients at a daily risk of their internal organs and arteries spontaneously rupturing. Working closely with the EDS National Diagnostic Service, a highly specialised service commissioned by NHS England with clinics based in Sheffield and London, the charity provides support to families affected by vEDS.

Jared and Sarah have long been supporters of EDS UK and in 2017 we jointly hosted the UK’s  first vEDS conference.

We are absolutely delighted and honoured to receive the Community Champion award from The Ehlers-Danlos Support UK. Our team and our volunteers work tirelessly to improve the support we provide to people touched by vascular EDS. The whole team were beyond excited when we were announced as a Community Champion. Thank you to the Ehlers-Danlos Support UK for giving Annabelle’s Challenge recognition with this brilliant award.

Jared Griffin, CEO Annabelle’s Challenge

In June 2018 the team won the Queen’s Award for Voluntary Service. This unique honour was created by Her Majesty to mark the Golden Jubilee in 2002 and to recognise the outstanding contributions made to local communities by groups of volunteers.

Last year they where awarded £177,415 in National Lottery funding to support their work with individuals living with vascular EDS.  The new funding from The National Lottery Community Fund will see the charity reach and connect further individuals and families through their vEDS support pogramme, which includes helpline support, delivering talks to schools, hosting regional support groups, visiting families in their home, and facilitating ambulance markers. At the same time, the charity will be able to expand its holistic support and increased collaboration with health and educational professionals.

Annabelle’s Challenge works tirelessly to help those in the vEDS community; collaborating and working with them is always a pleasure and we’re grateful for the solid partnership formed, including our joint support meetings and conferences. Sarah Hamilton, EDS UK Advice and Information Manager

As a valued charity partner of EDS UK they are a great example of achieving more when we work together. We would like to thank Megan, our Manchester, Bolton & Oldham Area Coordinator volunteer  for presenting the award.