Annabelle’s Challenge (or Annabelle’s Challenge Vascular EDS Charity to give it its Sunday name) is a Bury based registered charity run by Jared Griffin. His daughter Annabelle is the focus of Jared’s efforts. Annabelle’s Challenge is the leading charity in the world for people with Vascular Ehlers-Danlos syndrome.
Jared and his wife Sarah, realised that Annabelle had something wrong when she repeatedly bruised more than normal. Following other incidents, Annabelle was given a full check over and was fortunate that a doctor recognised the possibility that she had the condition. It took many tests to confirm it, and the realisation of the situation changed the life of Jared, Sarah, and Annabelle’s two brothers for ever.
Vascular EDS is a life threatening genetic disorder. It is characterised by arterial aneurysm. In other words, it is expected that Annabelle will die while still relatively young – there average life expectancy is about 50. She has to live a relatively sedate life because of the potential for one of her arteries to rupture causing internal bleeding and almost instant death.
Being a genetic condition, there is no known cure, but there remains a need for support in several areas. One area of support is towards the medical profession in developing their knowledge about the condition and thereby to improve their diagnoses. The second is to provide support to other people with the condition and their families.
The first ever conference in the world for people with Vascular EDS and for members of the medical profession was held at the Village Hotel at Heap Bridge last year. There were visitors from France, USA and Australia. Following on from the success of that event, Jared is now organising a further event which will take place in the autumn of 2018. The focus of the event last year was on the medical side. The focus of this year’s event will be to allow the families to interact and thereby benefit from a realisation and acknowledgement that they are not alone.
Annabelle’s Challenge was one of the three charities supported by Mike Connolly during his year of office as the Mayor of Bury. The funds raised during that year provided much of the support for the 2017 conference. Bury District Freemasons and the East Lancashire Masonic Charity is proud to be able to contribute to the success of the 2018 conference. Bury District Charity Steward Steve Clark met up with Jared and Annabelle to hand over a cheque for £1,000 towards the costs of arranging and running the conference.
