SEDS 2020 End of Year Recap




2020 SEDS End of Year Review


An extremely challenging and eventful 2020!


As we welcome in a (hopefully) much better New Year, it enables us to reflect on what has been achieved, worked well during an extremely challenging last twelve months for us at SEDS in 2020.


To summarise, 2020 will remain engraved in our minds for many reasons, but we have fundamentally achieved some incredible things, even in the most challenging circumstances at times. We managed to continue to successfully raise money for our members in order to support them and created new ways of working online even before the first Covid lockdown, helping us to continue to support members, some in extreme situations with regard to their physical and mental health.


We were proud to have been awarded numerous accolades and saw significant expansion as we changed from a community group to a registered CIC, which has meant a truly landmark year and not one not to be forgotten.


To reflect here are the main achievements, innovations, milestones and projects which have made 2020 so remarkable for Sussex Ehlers-Danlos Syndromes and Hypermobility Disorders (SEDS) CIC 13040675.


1. January - We had volunteers support us running a ‘Stay Safe from Scams’ session with Sussex police who donated £500 from the Property Act Fund to our cause in Horsham with Councillor Kate Rowbottom, Chair of Horsham District Council, and the local MP Jeremy Quin.












2. We were delighted to win several key grants which helped start to fund the support for our members. Grants were awarded from the names below: We are extremely grateful to all these organisations and everyone who donates to support us.













3. We developed a new logo design for SEDS using the traditional Sussex flag colours, blue and gold/yellow. This will be updated again this year to reflect our new CIC status.











4. March/April - Lockdown 1.0 during the Covid-19 pandemic.

SEDS members were becoming more anxious, plus their families and friends. As the mainstream charities were unable to provide their normal support cards, SEDS stepped up and created and designed new alert cards for FREE that were downloadable and hosted on our website www.sussexeds.com.

These were shared with other organisations. We were pleased to see SCIE host them, the Department of Health and Social Care and the British Association of Social Workers on their Covid19 Gov.uk resources site.

This was the first time we were put on the Covid-19 Heroes list.













5. We wrote blogs and articles on behalf of the main charities and national organisations about Ehlers-Danlos and Hypermobility Spectrum Disorders. We also encouraged our members to write blogs for publication. We also wrote, spoke and presented on the media, radio, tv and webinars about hypermobility syndromes and some of the associated conditions.















6. Our members and others have been hugely grateful for our support, and for sharing our articles and blogs. 2020, more than ever has shown how important our group is for those suffering from EDS and HSD.