Items of all kinds, from coming events and dates to fund-raising exploits, to news about anything and everything to do with SPS, including words, pictures and videos. If you have something to share, please get in touch at: admin@smssupportgroup.co.uk

Feb 29 2020

Rare Disease Day: Launched by EURORDIS in 2008. The campaign started as a European event and has become a world phenomenon, with the USA joining in 2009 and participation now in more than 90 countries.

Apr 2020

Charity AGM: Stiff Person Syndrome UK and Ireland Support Group and Charity AGM. Date and venue to be confirmed.

May 17 2020

Stiff Person Syndrome Annual Awareness Conference. From 1pm to 4pm at the Hartford Health Care Health Centre, 280 South Main Street Cheshire, Hartford, Connecticut.

2019 Events and News in Words and Videos
UPDATE March 11, 2019: A further £45.50 from the tribute night has been collected, bringing the total to £244.68.
UPDATE February 10, 2019: A well-attended music night in Tony's memory held in his hometown of Hornsea raised £199.18 for the SPS UK and Ireland Charity.
January 24, 2019: It is with huge sadness that we must record the sudden passing of Tony Barr who played a key role on the committee of the SPS UK and Ireland Support Group and Charity. Tony died in hospital on January 24 after a short illness. He was just 51. Tony, from Hornsea, East Yorkshire, joined the charity committee in 2011, although he'd been an active member of the group for several years before we tempted him to add his knowledge and expertise to the charity's organising body. His technical expertise, especially recently with the development of the new website and SPS Map of the World, was invaluable. The Map, especially, will be a fitting memorial to his contribution to raising awareness of SPS around the world. Tony was also a hugely talented musician and extremely well known on the local scene, particularly with the Frogg Brothers, a band with a highly unusual but compelling blend of many genres. But more than any of that, he was one of the nicest, most genuine people you could ever wish to meet. He leaves a wife, Tanja, and will be sorely missed.
September 13, 2019: Greek swimmer Alexandra Stamatopoulou clinched the silver medal in the World Para Swimming Championships in London today. The SPS swimmer, from Piraeus, near Athens, completed the 50m backstroke in a time of 52.86 seconds. Watch the race by clicking the Silver Lining banner above and see more of her story and pictures on the Video/Media page under Photos and Videos.
May 30, 2019: David Napier, from Camden, New South Wales in Australia, has written a moving poem about the "mountain" in life that he has to climb while suffering from SPS. The native of Kirkcaldy in Fife, Scotland, is an Admin for the open US Facebook group Stiff Person Syndrome - SPS. Several of his videos feature on our "Video/Media" page and his story in our "Stories" page. To listen to him recite his poem, click the "Anguish and Despair" banner above.
May 2019: The knitting and baking skills of a Scottish woman have benefitted the SPS UK and Ireland charity to the tune of £110. Leah Stafford, from Dunfermline, is the aunt of sufferer Vicky Lawrie and she wanted to do her bit to help the cause. She said: "SPS UK is an important charity as it is the only charity which dedicates itself solely to SPS. It helps to support people in the UK and Ireland suffering from this terrible illness, and to raise much-needed awareness."
 
February 27, 2019: Liz Blows, SPS UK and Ireland Charity founder and secretary attended Rare Disease Day at the House of Commons, London. She was there to promote SPS. She handed out the following questions, which were stapled to a charity card: 1) Why are so few neurologists aware of Stiff Person Syndrome? 2) SCT option for those applicable. 3) CBD is a must for some sufferers. 4) SCIg as opposed to IVIg, saving money for the NHS. All with the message: Please get in touch with me: liz.blows@smssupportgroup.co.uk. Many MPs were unable to attend, but she gave the questions to NHS staff and pharmaceutical companies, two of which promised to reply.
February 5th, 2019: Palm Coast resident Mike West successfully encouraged his city leaders to declare February 28th "Rare Disease Awareness Day". Mike said: "I requested the city and State (Florida) to issue the Proclamations for Rare Disease Awareness Day because there are over 20 cases of SPS alone in the State."  He added: "The reason I do this each year is to show people with SPS that there are things that they can do in their city/state to help raise awareness of SPS." Mike, who is an admin for the Facebook group Stiff Person Syndrome Association, can be seen in the video sporting an SPS logo on his shirt while accepting the proclamation and talking about his life with SPS. Click the banner to go to the YouTube video. Note: To see Mike in action, go to time stamp 20 minutes 34 seconds.
UPDATE January 2, 2019: Bequest for UK SPS Charity: Following the sad passing of a member of the Stiff Person Syndrome UK and Ireland Support Group and Charity, donations to the charity totalling £995 have been made. A further £50 has now been received bringing the total to £1,045. For privacy reasons, names have been withheld, but everyone connected with the charity offers their most sincere condolences to the member's family, and gratitude for the contribution to the charity's funds.
January 2019: Study of IVIg vs. Placebo to treat subjects with Stiff-Person Syndrome (SPS) Spectrum Disorders. The purpose of this study is to assess in a blinded, randomised controlled fashion, whether nine weeks of immunoglobulin therapy (IVIG) can reduce stiffness and spasms in subjects with Stiff Person Syndrome (SPS). Click the banner to go to the website.
January 2019: 22-year-old SPS sufferer Ben Oakley from New South Wales, Australia, has launched a personal website called "Roll on Ben Oakley - Drop A Dollar Now and Fight Rare Disease". Ben has suffered more than 600 seizures and is campaigning to legalise medicinal cannabis, the one treatment that has delivered significant benefits. See his video on the "Video" page. Click the banner to go to his website.
October 8, 2019: Liz Blows, Founder and Secretary of the UK and Ireland Support Group and Charity, gave a five-minute "speed" talk to medical experts, pharmaceutical companies and other patient groups at the Manchester Rare Diseases Showcase organised by Findacure, a UK charity that is building the rare disease community to drive research and develop treatments. Despite a fall earlier that day, Liz's SPS presentation went ahead and was well received. Click the "SPS Speed Talk" banner above to hear her in action.

Get Social

Copyright © 2018 Stiff Man Syndrome Charity. All rights reserved

UK Telephone: 01482 868881  

Stiff Man Syndrome UK and Ireland Support Group and Charity: Founded in 1998 by Liz Blows

Stiff Man Syndrome Support Group and Charity: Liz Blows (Chair), 75 Normandy Avenue, Beverley, East Yorkshire, HU17 8PF
Stiff Man Syndrome Support Group and Charity is not-for-profit
Charity Number: 1099206

  • Grey Facebook Icon
  • Grey Twitter Icon
  • Grey Instagram Icon
  • Grey LinkedIn Icon
This site was designed with the
.com
website builder. Create your website today.
Start Now