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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.
A new study into SPS has been set up in Germany by Professor Helmut Juengling. A comprehensive questionnaire has been developed and made freely available to SPS sufferers worldwide in multiple languages. "The part about SPS drugs will be evaluated in a doctoral thesis. Who takes which medicine and in which dosage? What is the effect? Satisfaction, side effects, etc," he said. "From the part dealing with the symptoms before the disease, we will try to generate an interactive checklist for people who have SPS symptoms or a similar disease, but are passed on from one doctor to the next. After answering about 20 online questions, the system will say for example: "The probability that you have SPS is relatively high" or “You may have Restless Legs Syndrome”." Part of the questionnaire will be evaluated by a doctoral student (this has already begun as of June 2020). The other part by Prof Juengling. It is too early say when the study will be complete and its findings published. To access the questionnaire, click the banner headline "New SPS Study" above.
June 19, 2020:
Dr. Tara Zier (pictured right) has launched a new website aimed at fundraising to research SPS. The Stiff Person Syndrome Research Foundation is a not-for-profit operation based in Maryland, USA. Dr Zier, founder and president, said: "There are medications that help dampen the symptoms but they, like all meds, have undesirable side effects... we need research to gain a better understanding of this syndrome, its causes and remedies." View the site here:
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.
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.
Rosaleen (Rosie) Patterson
“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).