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
Events and News in Words and Videos
December 2021: US sufferer Laura Kassem is running a fund raiser throughout December via Facebook on behalf of the UK and Ireland Support Group and Charity.
"I'm raising money for STIFF MAN SYNDROME SUPPORT GROUP (the charity's UK name) and any contributions will make an impact, whether it's $5 or $500 as I suffer from this extremely rare neurological disease with autoimmune features as well and need help from you all, " said Laura. Click
November 10, 2021: Young SPS sufferer Meghan Bayer (pictured) is spearheading a drive to raise awareness across all 50 states of the USA.
The taekwondo champion from Aiken, South Carolina, wants help encouraging all state governors to declare March 15th, 2022, (the 7th) International SPS Awareness Day.
She is hoping fellow SPS-ers in each state will join the initiative as state representatives of the rare condition. In every state, the office of the governor has the authority to declare a day “X Awareness
the headline banner (above) to go to her Facebook page, or click here
Day”, in this case the 7th Annual International Stiff Person Syndrome Awareness Day on March 15th, 2022. Each state has its own process for obtaining a proclamation from the governor recognizing such a day and no two states are exactly the same. Generally, the governor’s office requests 30-90 days minimum to write the proclamation. Meghan’s objective: To have every state recognize Int’l SPS Awareness Day with the representative from that state getting media
attention and/or media opportunities. Meg, who was a pediatric onset case of SPS, said: “I want to get SPS in the media nationwide, giving people a platform to share their SPS journeys, and uniting all SPS-ers in the United States. In turn, the representative organization will receive the “credit/proceeds for Hopkins,” highlighting the patients’ stories in the media." As of November 8th, 2021, nine states are represented by fellow sufferers. For more information, see details below.
November 3, 2021:
Dr. Tara Zier (pictured) who launched a new website aimed at fundraising for research into SPS in June 2020, has been chosen as a recipient of the prestigious Chan Zuckerberg Inititiative: Rare As One award. Tara's The Stiff Person Syndrome Research Foundation is a not-for-profit operation based in Maryland, USA. "I am beyond ecstatic," she said, "It offers incredible networking and financial support to patient-driven groups like ours." As many as 7,000 rare diseases affect 400 million people globally. The vast
majority are not well understood, and less than 5 percent have approved treatments. Yet worldwide, patients are meeting these challenges head-on. The Rare As One project, says the Initiative, is committed to uniting these communities in their quest for cures. Tara added: "This (the award) was the epitomy of teamwork at its best. We might not be rare as one, but we are so much stronger together." To view her website, click the headline, or this link: https://stiffperson.org/
September 8, 2021: German SPS sufferer Anke Ahrens discovered a new kind of pain when she decided to risk an awareness-raising tattoo on her arm (pictured left). "Unfortunately, I'm crazy sensitive, but it was worth it. It only hurt during the tattooing, not afterwards," said Anke, who is an Admin of the German Facebook group Stiff-Person-Syndrom: Wenn du einer von eine Millionen bist
The stunning design took 2.5 hours but deciding to do it took longer: "I never wanted a tattoo but I like to be safe if something ever happens and I am unable to articulate my distress. I don't like to wear a bracelet or similar. In addition, I try to raise awareness of SPS. It was important to me that if anyone sees the tattoo they immediately know it's something medical and probably important that help is needed straight away.".
September 2021: Greek swimmer Alexandra Stamatopoulou clinched the bronze medal at the Tokyo Paralympics in the 50m S4 backstroke in a time of 49.63 seconds. The 34-year-old from Piraeus, near Athens, who was diagnosed with SPS at the age of 14, is a multi-award winning swimmer. See her details and competition history by clicking here
September 2021: The re-scheduled SPS Annual Awareness Conference and Dinner is set to take place on Sunday, May 15, 2022 at Hartford HealthCare Center, 280 South Main Street, Cheshire, CT 06410. Dr. Duarte Machado is the main speaker. For more information, contact Sue Swartzburg Mackie at firstname.lastname@example.org Details here
September 2021: The Rare Disease Day established by the UK and Ireland SPS Support Group and Charity is set for October 24. The date marks the anniversary of the first SPS Newsletter sent out to sufferers by UK charity founder Liz Blows in 1998. "It was before social media and was a typed update about SPS mailed out to individuals. How things have changed!" she said.
August 3, 2021: It is with great sadness that we announce the passing of Mark Edward Routhier Jr. of Abington, Massachusetts, USA. Mark passed away on August 3, 2021 at the age of 31 after fighting a long battle with Stiff Person Syndrome, a rare neuromuscular disease. He fought it like a warrior, always giving hope to those who fought the disease with him. See tribute here
July 11, 2021: MIchael (Beba) Quintin McGowan of Clearwater, Florida, USA, loving husband of Elizabeth Rose McGowan, passed away on July 11, 2021 at the age of 72 after having fought a 20 year battle with Stiff Person Syndrome and a myriad of other health issues. Despite the pain and challenges, he was strong and stoic until the very end. See tribute here
July 24, 2021: Ruth Carolyn Mary Warren (nee Hooper), loving wife of Les, from Swindon, Wiltshire, England, passed away aged 81. The couple were members of the UK and Ireland Facebook group since March 2013. Admin Liz Blows said: "Ruth will be sorely missed, she was a lovely woman."
May, 2021: Zaheer Hussain, from Rotherham, South Yorkshire, England, passed away aged 46. He was a member of the UK and Ireland Facebook group. Admin Liz Blows said: "This is so sad, Zaheer was such a nice man and it was far too soon for him to pass."
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 dedicated Facebook pages:
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:
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).