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More SPS News and Videos 2019-2020
Various SPS-related pictures of people, places, events. This is a community area where people can share memories of all kinds. If you would like us to host, or link to, your SPS-related pictures or videos, please contact us at: admin@smssupportgroup.co.uk
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:
October 2020:
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."
April,2020:
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: liz.blows@smssupportgroup.co.uk. 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.
SPS Silver Lining for Greek Champion
Added September 2019: SPS sufferer Alexandra Stamatopoulou, from Piraeus near Athens, Greece, claimed silver medal in the 2019 World Para Swimming Championships in London on September 13. Alexandra, who won a silver and bronze at the World Para Swimming Championships in Mexico in 2017, claimed second place in the final of the women's 50m backstroke in a time of 52.86 seconds. Watch the race in the YouTube video below.
SPS Brings Sufferers Together
Added August 2019: Stiff Person Syndrome may be debilitating, but it’s no barrier to making new friends, no matter how far away. That’s how it was for Adrienne Shaffer and Katie Manning in July this year. The dynamic duo “met” via the Stiff Person Syndrome Association Facebook page. Katie, from Trenton, Michigan, found Adrienne because she was heading to the desert city for treatment and thought it would be great to meet up with a fellow sufferer, especially after enduring a 2,000 mile trip to the Strip. “We had been messaging for a few weeks, discussing care, but I was definitely excited to meet her,” said Adrienne. They had dinner at a Vegas eatery. Said Katie: “We hung out for about 2 hours. It was actually kind of funny because we were able to laugh about things because we understood each other so much. We both had to keep saying “I don’t remember what I was talking about” … that darn brain fog, lol.” They were both diagnosed in 2017. “We discussed how we both started with low back pain around the age of 19. We both took about a year to be diagnosed,” said Adrienne, adding: “We definitely bonded over brain fog and laughed about it as well as our walking aids when we need them. It was amazing to speak to someone that truly gets it. I’m so thankful to have met her.”
US Students Rally for Awareness
Added May 2019: Devoted son Eugene Okari and five friends came together at their Prom to help raise SPS awareness. Eugene (19) from Plymouth, Minnesota, was supporting mom Monicah Orucho, who was diagnosed with SPS last year. Eugene, who is on the left of the picture, said: "For almost a year she was suffering these symptoms and we couldn't get any answers. I almost gave up. I wanted to connect with people, which I did on Facebook. I read about it, watched videos and decided I wanted to make it special for my mom and
everyone around the world by creating awareness of SPS. I pitched the idea to my friends who have been absolutely supportive in my hard times and they all collectively agreed to be part of it. I'm not sure how many people get the meaning behind the ribbons, but just having five of my good friends have them was a goal achieved. Hopefully they'll tell their friends and so on."
Outpouring of Support for Teen Kylie
Added May 2019: An appeal in support of long-suffering Albion teen Kylie Allen-Kulyk has generated an overwhelming response from well-wishers. As of May 4th, almost 1,000 e-cards had been sent to her hospital room in UPMC Hamot in her home State of Pennsylvania with messages of support and best wishes for the 18-year-old who has spent most of the year to date in hospital. Her uncle, Jeff Hannah, said: "I just want to thank everyone who answered my request to flood my niece's ICU room with e-cards. They are still coming in and the response has been unbelievable. The first day we hit over 150. We had over 700 come in just today (May 4th). This is amazing thank you sooo much - we can't believe the support we are receiving."
Birthday Treat(ment)
Added May 2019: John Fleming from Southbury, Connecticut, was pleasantly surprised when the nurses and care team at Praxair Cancer Center in Danbury, CT, helped him celebrate his 52nd anniversary on May 1st while in hospital for his IVIG treatment. He said: "My wonderful nurses and care team made it a special day for me on my birthday." And as he was getting ready for his treatment, he added: "Here we go again. A little different plan ... got my IVIG order changed from 40 GMs x 5 days to 50gms x 4 days. Gets it done one day quicker, but may pay dearly for it? The 'Migraine Rocket Machine' may launch? Test run the next few months? Hold on for the ride!"
We Will Not Be Beaten!
Added April 2019: Kathi Frizzell Rose and her husband, Jim, who was recently diagnosed with Parkinsons, together completed the Parkinsons Walk. The couple, from Jacksonville, Florida, did the 1 mile walk (not the 5k run). Said Kathi: "I decided to wear my SPS t-shirt which I had made up in BIG letters so people could read it and try to raise some awareness for all of us with SPS. Hey, there was a huge group of people so, what the heck, I decided to go for it! I came in last in 46 minutes, thought I was going to collapse, but somehow I made it! Jim and I are a team and take care of each other now. Some of our family showed up to surprise us. Now we just need something like this for SPS."
Added April 2019: Creative Zebra art work by Bess Barnett Theriault from Huntsville, Alabama in the USA. She said: "I used to make cards and a long time ago l made one for a friend, with a Zebra l designed. I was going through my stuff and came across it but unfortunately I had cut off the tail by mistake. I was trying to find a Zebra on the web for an idea of how to add a tail to mine - and saw this."
Added March 2019: An enlightening snippet from the classic US comedy the Golden Girls. It's a scenario many SPS-ers will immediately identify with - finding a doctor who understands the problem and can give a diagnosis. Here, the inimitable Dorothy (Bea Arthur) stands up for herself and confronts a hapless medic who has failed to identify her chronic illness. Hugely funny, hugely relevant to SPS-ers everywhere.
Snow Joke!
Added February 2019: Who says you can't have fun in the snow? After a heavy fall in LaCrescent in her home state of Minnesota, Joni Welda and friend enjoy some quiet bonding amid the white stuff. Said Joni: "I can’t play in it anymore but it sure was fun to sit in it! We got about a foot of snow here in southern Minnesnowta - who says you can’t have fun with SPS?"
Biting Back
Added February 2019: David Napier follows in the footsteps of Liz Blows (January 2019) going all colourful to mark Rare Disease Day on February 28, 2019 (February 27 in England) - a great way to "Show Your Rare".
Magic Moment at the Mayo
Added January 2019: A celebration in pictures of one of those rare moments of relief from the struggle that is life as an SPS sufferer: Sonia Chawdhary and Joni Welda recently met for the first time at the Mayo Clinic in Rochester, Minnesota. Sonia is from Campbell, California, and Joni from LaCrescent, Minnesota. It's quite clear from the amazing range of expressions on both their faces that it was a genuinely joyous encounter. It was described as a "mountain of confusing feelings" to which Sonia replied: "It was. The first thing we said to each other as we held each other’s shoulders, with shocked eyes, was Me: “You look normal!” Joni: “You do too!” And we kept repeating it between hugs, standing in the middle of the Mayo cafeteria. But now it feels like one of those things where an SPS-er can tell the other “you look normal,” but if a non-SPS-er were to say it... oh boy! I’m rolling my eyes in my head at the thought." She added: "After years of feeling like a Martian, correction, someone from Krypton (Superman and our hypersensitivity to sound), meeting another Kryptonian was crazy! I think we kept hugging, laughing, discussing our symptoms throughout lunch. Of course, lunch was over too soon *sigh* but now we have the map (SPS Map of the World) we’ll definitely find more of us and have more hugs and crazy laughter next time." So there you go - life isn't all bad all the time and moments like these (almost) make it seem worthwhile.
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Patiently Helping the Cause
Added January 17, 2019: Liz Blows, from Beverley, England, and founder of the UK SPS Charity and Facebook group, attended Findacure's Patient Group Workshop in London. The Workshop was designed around the everyday impact of rare diseases together with ways and means of supporting the patient community.
LEFT: Posing with Findacure's banner.
BOTTOM LEFT: Findacure's top team.
BELOW: Unexpected picture of Liz on the front cover of Findacure's "Delegate" pack.
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