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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

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 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.

7. April - As Covid-19 continued to spread across the county we decided to adapt very quickly, to provide more online support for group activities, therapies - a unique and novel idea. With one-to-one screening to start with online to ensure safety with EDS and HSD aware practitioners. We arranged groups of online Pilates with a hypermobility professional from Bridgeham Clinic, who has hypermobility issues herself, in a 6 seated group class and a standing class each week.

8. May - As well as our alert cards we linked with a wonderful sympathetic group who made us masks for members and volunteers. During May, which is EDS/HSD awareness month, we ran a competition and funded prizes for members of Sussex EDSHSD.

We would like to thank a local East Grinstead mask group who donated us masks to distribute free to our members in different sizes during the first lockdown. We also funded visors for those who wanted both.

Winner – Eleni Kazantzaki

9. June - On 18th June we celebrated SEDS’ second birthday which coincided with the launch of our first Honorary Patron, Dr Jessica Eccles who leads research into hypermobility syndromes and anxiety.

This was followed later in the year with the announcement of our second Patron, Dr Tina Peers who specialises in Ehlers-Danlos Syndromes with Histamine Intolerance and Mast Cell Activation Disorders (MCAS).

10. August - Webinars started!

Jane was asked to speak about Ehlers-Danlos syndromes and Hypermobility spectrum disorders for:

‘Ausome Training’-Ehlers-Danlos syndromes

'Aucademy' Pregnancy - Issues with Tissues’ EDS HSD

'Aucademy' academic month Ehlers-Danlos syndromes and Hypermobility Spectrum Disorders overview

We then started hosting our own webinars exclusively live with our members starting with Chair of the DBA qualified dietician Sophie Medlin

Followed by Dr Tina Peers our second Patron towards the end of the year on MCAS HI Covid

These videos can also be found on our Media Section of the website:

11. As the online meetings developed within SEDS and outside, we were aware of the issues people had knowing when to speak and how to speak particularly if anxious or had other accessibility issues. We designed these 4 cards for members initially but as popular larger UK organisations and charities. They are hard wearing and available from our website. Please view website for further information. Our Chair helped update the guidance for hypermobility on MSK Sussex website and SEDS is now the go to support group.

12. We are proud to announce that both SEDS and the Chair, Jane Green were nominated for and won many awards and commendations for their continued and relentless support, advice and selfless acts of kindness during one of the hardest years around.

13. After advice, SEDS took the next step to grow bigger to the Sussex Ehlers-Danlos Syndromes and Hypermobility Disorders (SEDS) CIC, a community social enterprise. Our group of volunteers has also continued to grow during the year and now is shaping into a strong, cohesive group and we are looking forward, albeit in challenging times, to more inclusivity, awareness of diversity, productivity and partnership in the future.


2021 and beyond...

We are looking forward to 2021, hoping for stability and even better things happening.

More funding, more support for our hypermobility aware activities, events, support meetings, therapies and hobbies.

More advocacy in key areas affecting symptomatic hypermobility and associated conditions in education, health, social care, transport accessibility and more.

If you want to keep in touch with what we’re doing keep following us!

Twitter - @sedshsd

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