Sydenham's Chorea Association
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News

See all of our latest news stories below. If you would like to recieve our quarterly newsletter, please send us your name, email address and home address to info@sydenhamschorea.org.uk.

Research Update

As you may have seen from recent social media posts, the Sydenham's Chorea Association are supporting some research into the condition, which is being undertaken by a UK wide group of professionals and experts in Sydenham's Chorea. Dr Michael Morton from the University of Glasgow has kindly summarised the studies for us so we can keep you all informed with our progress. Please click here to access the most recent summary.

The Sydenham's Chorea Association Incorporated as SCIO

We are delighted that our application for incorporation as a Scottish Charitable Incorporated Organisation (SCIO) was accepted by the Scottish Charity Regulator (OSCR). Our new charity number is SCO047005.

This is a fantastic achievement for us, and will allow us to expand the work that we do to educate the public and professionals about Sydenham's Chorea, support those living with the condition, and fund research into it.

A big thank you goes to the team at the Glasgow Children's Hospital Charity who have supported us in a number of ways up to this point, and we look forward to continuing to work with them on the research and patient support side.

Nicole & Crookfur Pupils Raise £300

A big thank you to Nicole Strachan and the pupils at Crookfur Primary School who have raised £300 for us. Our Chairman's niece held a bake sale at her school (which he also went to, a little while ago!), selling cakes to other pupils during breaks and at a careers night.

Andrew went along to meet Nicole and the other pupils, and after telling them about his own family's experience of Sydenham's, was presented with a cheque for an amazing £300. Thank you to everyone for their generosity, and a special thanks to Nicole for organising.

Information Leaflet in Italian

The Sydenham's Chorea information leaflet that we produced with NHS Greater Glasgow and Clyde has been translated into Italian by the National Centre for Rare Diseases in Rome. They will be using the leaflet as part of their support for Sydenham's Chorea patients in Italy. We are delighted to be able to work with the team there, and very pleased that our information is being used on a wider scale. To access a copy of the leaflet in Italian, please click here.

Paxton Chip Shop Raise £35

A big thank you to the staff and customers at Paxton Chip Shop in Hexham who raised £35.43 in their Sydenham's Chorea Association collection tin. All of these fantastic donations are very important to help us continue our support and research.

Cafe Crema Raise £101!

A big thank you to the team at Cafe Crema at the Scottish Enterprise Technology Park in East Kilbride, for raising £101 in their Sydenham's Chorea collection tin last year. A big thank you too to all the generous people who donated. We are hoping to help fund some research into Sydenham's Chorea this year in Glasgow, so this donation is fantastic.

Yorkhill Team Publish Latest Research

The Sydenham's Chorea team at Yorkhill Hospital in Glasgow have successfully had their recent systematic review published in Developmental Medicine & Child Neurology. The team were looking at the psychiatric symptoms presenting in Sydenham's Chorea. Mallika Punukollu, Michael Morton, Nadine Mushet, Marisa Linney and Colm Hennessy completed the review which was published in April. For more details, or to purchase a copy of the article, click here. Nadine and Dr Morton are both founding members of the Sydenham's Chorea Association.

New Sydenham's Chorea Information Leaflet Launched

We are delighted to announce the launch of our new Sydenham's Chorea Information leaflet. Produced in conjunction with NHS Greater Glasgow & Clyde and specialists at Yorkhill Hospital in Glasgow, the leaflet is the first of our educational and support publications.

"Our main aim as an organisation is to educate people about Sydenham's Chorea", says SCA Chairman Andrew Samuel. "This leaflet will hopefully help people understand a bit more about the condition and the symptoms children suffer from."

Printed hard copies of the leaflet are available by request.

£10,600 Raised at First SCA Dinner

Last night (19th Sept) we held our first ever fundraising dinner at the Glynhill Hotel. Hosted by Gina McKie, and with entertainment from Edward Reid, the event has raised over £10,600!

With over 115 people in attendance, there were some fantastic items up for grabs in our auction and raffle. Thank you to all the people who donated our great packages. Our audience were more than generous in their bidding, and we have to extend a huge thank you to everyone who joined us. The evening was such a big success due to the great guests.

Chairman Andrew Samuel opened the evening, and presentations were given by Dr Manju Haridas and Nadine Mushet of Yorkhill Hospital. The evening was closed with entertainment from Edward Reid who had everyone up dancing the night away.

 

We are delighted with how successful the evening was. Special thanks to our lovely Yorkhill volunteers who were busy selling raffle tickets and managing auction donations. Thanks also to our donators including Pullman Volkswagen, Galleon Hotels, The Scotsman Hotel, Carrick Golf Club, Mearns Castle Golf Academy, Knockhill Racing Circuit, Calmac Ferries, Eastwood Golf Club and Glengoyne Distillery. To see some more photos, visit our Facebook page.

Yvonne and Kathleen Walk Their Way to £1,400

Sydenham's Chorea Association Board members Kathleen and Yvonne took on the West Highland Way this June and have so far raised over £1,400 for the charity.  The girls set off from Milngavie on the 31st of May and covered the 96 miles over the next few days. Unfortunately the weather was not always on their side, but the girls battled through rain and blisters, raising a fantastic amount of money in the process. A huge thank you from all of us here! This money will be used to fund research and support families living with Sydenham's Chorea.

Newsletters

December 2016