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: firstname.lastname@example.org. 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.