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Vascular EDS Conference 2020

Jared Griffin • Aug 16, 2019

VEDS Conference Announced!

We are proud to announce that Ehlers-Danlos Support UK and Annabelle's Challenge Vascular EDS Charity will once again be jointly hosting a UK vascular EDS Conference.

Annabelle’s Challenge and EDS UK jointly hosted the UK’s first vascular EDS conference in 2017, which saw over 100 patients, families and medics attend the weekend.

The conference is due to take place on the weekend of 9th May 2020 at the Village Hotel in Bury, Greater Manchester.

More details of the conference will be announced in due course, but it will follow a similar format to 2017 with a mixture of medical presentations from the EDS National Diagnostic Service and an opportunity for patients and families touched by the condition to meet others, share experience and form lasting friendships.

We would ask anybody interested in attending this event to not book any accommodation or make travel plans until full details of the event have been released.

We would like to thank the Big Lottery Fund for their kind grant, without which this conference would not be able to take place.

09 May, 2022
We are delighted to announce the appointment of Bonnie Jackson to the board of trustees at Annabelle's Challenge. "I am Bonnie, a MumOnAMission, my daughter Mia was diagnosed with VEDS in August 2021. After finding Annabelle’s Challenge and receiving incredible support from the community I have been able to ‘find light’ within the darkness by fundra ising for AC and raising awareness of VEDS to improve the lives of all of those effected by this condition. My professional career is within financial services, I have worked at MUFG Bank Ltd for 10 years and my current position is a team lead within the Trade Finance Middle Office. Prior to this I worked for British Arab Commercial Bank also within the trade sector. My most important and treasured role is being a mum to my amazing daughter, Mia." Welcome to Team AC Bonnie! 💜
by Jared Griffin 18 Sept, 2020
It’s Jeans for Genes week, happy 25th anniversary! Thank you to our neighbours Cosalea café for supporting Annabelle’s Challenge and for wearing their jeans to raise awareness of rare genetic disorders like vascular EDS.
by Jared Griffin 02 Sept, 2020
WE HAVE MOVED!! Our new home for Annabelle's Challenge and Event Hire is now: Annabelle's Challenge, Walshaw Park House, Walshaw Road, Bury, BL8 1PY. Telephone: 0161 797 4746 Helpline: 0800 917 8495
by Jared Griffin 24 Aug, 2020
We celebrate the 1st anniversary of Christina taking on the role of Patient Coordinator for Annabelle’s Challenge, she joined the charity as a volunteer 6 years ago and along with all our volunteers has been instrumental in AC receiving The Queen’s Award for Voluntary Service in 2018. Christina has taken the initiative to create, lead and drive forward the work of our organisation supporting families affected by vascular EDS. During the past 12 months we have seen the charity grow to over 300 members. We are incredibly grateful and proud of you for helping to take AC to the next level and look forward to the new chapter beginning on 1st September.
by Jared Griffin 28 May, 2020
Thank you Newmarket Harley-Davidson for supporting Annabelle's Challenge and REDS4VEDS Day. We love the red Harley #REDS4VEDS
by Jared Griffin 21 Apr, 2020
Treating the crews at North West Ambulance Service Bury to some well deserved snacks and fresh hot food kindly donated by Crumbs102. A big thank you to everyone at NWAS from all of us at AC.
by Jared Griffin 01 Apr, 2020
Dear Member & Supporter, A huge thank you to all our amazing families and supporters across the world for raising an outstanding £117,637 / $145,421 for Annabelle’s Challenge over the last 12 months. Thanks to your generosity we can continue to support our vascular EDS community during the coming weeks and months ahead through this challenging time. We have taken several steps to adapt to the current crisis: - Reviewed our cost base and identified further savings - Extended the charities reserve policy - Applied for an emergency funding grant - Provide daily updates on COVID-19 - Increased support through our helpline, website and social media - Launched regional support groups right across the UK from April 1st - Moved to virtual support via the Zoom platform I have received valuable feedback, updates and suggestions from our vEDS steering group, chair of trustees, regional area support coordinators, our members and clinicians on our medical advisory board. We have now implemented our revised plans so that we can continue serving our vEDS community, united and focused. We will keep this under constant review in the spirit of continuous improvement. We are here for you. Together, we will get through this. Best wishes Jared
06 Mar, 2020
Newsletter has gone out to our members, 6 regional support groups now launched across the UK, 8 area coordinators recruited thanks to one of our amazing stars on the team Christina, now supporting 280 members touched by vascular EDS.
by Jared Griffin 28 Feb, 2020
Comparing notes on the House of Commons terrace with our friends at Aortic Dissection Awareness UK and Beat SCAD UK at the Rare Disease UK reception yesterday. Great to see our organisations working together to support families affected by arterial diseases. Pictured: Gareth Owens (Aortic Dissection Awareness UK), Sarah Coombes (Beat SCAD) with Jared Griffin & Christina Cooper (Annabelle's Challenge).
by Jared Griffin 16 Feb, 2020
Thank you to the customers of Asda for sharing the magic and voting for Annabelle’s Challenge during the Christmas green token campaign helping us to win a £1,000 donation from the Asda Foundation. Thanks also to Jill Brady, community champion and to Annabelle for collecting the cheque on behalf of the charity. This donation will go towards funding an excursion for families touched by vascular EDS at our conference in May.
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