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: firstname.lastname@example.org
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.
Update December 31 2020:
Dr. Tara Zier (pictured right) who launched a new website aimed at fundraising for research into SPS in June 2020, has raised more than $52,000 to date. 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." To view the site, click the banner headline, or this link:
Somerset (Australia) SPS
sufferer Shane James is undertaking a marathon 1,000Km run during December 2020 to shine a light on SPS. It was contact with American Doctor Tara Zier, who also has SPS, that led him to commit to the task. Dr Zier has started a research foundation at John Hopkins University Hospital in Baltimore and reached out to him after watching his documentary Run To Live.
He will be doing the Traversing Tassie Lighthouse run from Somerset to Eddystone Point through to Marrawah and back to Somerset. For the full story, click the banner headline above "Run for SPS."
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?" he said.
"What is the effect? Satisfaction, side effects, etc, 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 above "New SPS Study".
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).
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: email@example.com. 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.
January 1 2021:
Happy New Year! Given all the gloom and doom of the last year, we’re starting 2021 with a good news retrospective. Meghan Bayer, or Meg as she prefers to be known, from Aiken, South Carolina, USA, displayed SPS symptoms in 2012, but wasn’t officially diagnosed until 2018.
She is proof positive that adversity can be overcome. Despite SPS and being deaf since birth, her accomplishments are second-to-none, not least becoming a Taekwondo world champion.
The 3rd degree black belt competed in back-to-back American Taekwondo Association (ATA) World Championship competitions in 2018 and 2019. After successfully ranking #1 in the world standings, in 2018, the martial artist earned the title of World Champion in Traditional Forms, Traditional Weapons, Sparring, and Combat Weapons Sparring. In 2019, Meg struggled at the 50th Anniversary World
Championships where she depended on a feeding tube surgically placed in her abdomen to supply her with 100% of her nutrition. Despite feeling unwell, and against her mother’s advice, she won five more world titles, making her a nine-time World Champion. Immediately after the competition, Meg was admitted for a round of chemotherapy. In 2020, as reigning World Champion, she was determined
to qualify for the World Championships but they were cancelled due to the COVID-19 pandemic. Nonetheless, Meg is looking forwards to domestic and international competitions resuming in 2021.“Am I glad I have SPS?” said Meg. “No, I’d wish it away in a heartbeat. Am I glad that I have a true medical answer and it’s not “all in my head”, stress, conversion disorder, psychosomatic illness, functional neurological disorder,
etc.? Heck yes! The day I got my diagnosis was the day I’d been (im)patiently waiting for for almost seven years. I feel so incredibly validated after being told so many other things over the years. The feeling of relief that we are still trying new things and striving to make my quality of life the best it possibly can be makes me as content as can be.”
Meg, who was a pediatric onset case of SPS (symptoms started 2 weeks after her 16th birthday), has a dedicated Facebook page specifically for fellow young sufferers which you can find here:
She explained: “So many teens and young adults struggle with understanding and accepting that life just goes on and we all have unpleasant situations. There aren’t many in the group as there aren’t many younger people with SPS, but it’s there for those who need help.” You can find out more about Meg’s story here: