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: email@example.com
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.
Events and News in Words and Videos
An extremely rare disorder has turned one Fairport (New York) family's lives upside down, leaving them fighting both the disease and a struggling Medicaid system.
Madeline Shanley (20) was diagnosed with Stiff Person Syndrome that has left her bed-bound since March 2019.
“You’re just paralyzed in pain. And your limbs kind of contort and it risks breaking bones and tearing ligaments,” Madeline said. For the full story, click the "Far Too Young" banner.
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.
December 18, 2019:
The remarkable sum of
£1,550 has been donated to the SPS UK and Ireland charity in memory of 86-year-old Rosaleen (Rosie) Patterson from Liverpool, who passed away on October 28, 2019.
The collection was made for SPS UK on behalf of her daughter, Carmen Dixon (51), also from Liverpool, who suffers from SPS.
Carmen’s sister, Ruby Dixon (55), from London, said: “After our beautiful and humorous mother passed away, we set up a justgiving page in her memory for friends and family to make a donation to the charity you (Liz Blows) founded.
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.
“Amazingly, in just four weeks, we raised £1,550 in honour of our mum, which shows what a remarkable person she was that people held her so dear.
“Mum would be so proud that
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.
we are able to contribute to your charity in some small way. Thank you for the support you continue to give to people like my sister Carmen, She has been absolutely devastated by mum’s loss, but was delighted by the amount we have raised.”
Liz Blows, charity founder, said: “This is such a generous donation and my thanks go to everyone who contributed. Losing a loved one is a terrible event and my heart goes out to the entire family with the promise that we will make the best use possible of this money in Rosie’s memory.”
Rosie leaves four other children, Valerie (65), Iman (64), Melvin (62) and Affie (60).