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Latest News in Words and Videos 2021-2022
July 2022: RUDY is a study in rare diseases aimed at individuals and researchers working together for better rare disease care. Headed up by a research team at the University of Oxford, RUDY, which stands for Rare Undiagnosed Diseases Study, aims to transform clinical care for participants, including those with SPS, through patient driven research. So far, more than 3,500 sufferers of multiple conditions have joined the study. "We are expanding to include all rare diseases. The
number of diseases we are interested in is growing as more researchers join the network," says the website. Primary objectives are: To describe in detail how a rare disease affects individuals and to describe the differences between individuals with the same rare disease diagnosis. Find out more online here or by clicking the banner headline
June 2022: Greek SPS swimmer Alexandra Stamatopoulou has won gold at the World Para Swimming Championships 50m S4 backstroke category in Madeira. If follows on from her bronze medal at the Tokyo Paralympics in the same event. Alexandra, from Piraeus, near Athens, was diagnosed with SPS at the age of 14. She said: "It is a great joy when at World level, you win a gold medal! Thank you to everyone who believed in me and stood by me."
May 2022: The Stiff Person Syndrome Research Foundation, set up and run by sufferer Dr. Tara Zier, has been designated as platinum-level members of NORD (The National Organization for Rare Disorders), an American non-profit organization that provides support for individuals with rare
diseases by advocating and funding research, education, and networking among service providers.. Platinum membership represents the highest level of integrity and transparency for patient
advocacy organizations involved in medical research, drug development, medical education, and registries.
“NORD is thrilled to welcome The SPSRF as the latest official NORD member organization,“
said Peter Saltonstall, NORD President and CEO. “The SPSRF joins a dynamic, collaborative network of more than 300 rare disease members with access to all the resources and connections that NORD provides.” Click here to go to the link on the SPRF website for the full story.
May 2022: The re-scheduled annual Northeast Stiff Person Awareness Conference took place at Hartford HealthCare Center, Cheshire, CT. Dr. Duarte Machado was the main speaker at the event cancelled last year because of Covid. SPS sufferer John Fleming reported "a great success ... awesome." Dr. Tara Zier (pictured with Dr. Machado), founder of the Stiff Person Syndrome Research Foundation, also gave a presentation.
May 2022: A new SPS Facebook group launched this month called GAD Negative Stiff Person Syndrome to cater for sufferers who are GAD negative. To go to the site, click here
April 2022: Campaigning athlete Meghan (Meg) Bayer has been named Rare Revolution Magazine Spring 2022 RARE Inspiration.
The award by Rare Revolution, a US-based magazine and website with the mantra: "To bring about a dramatic and wide reaching change in conditions and attitudes for the rare disease community", recognises Meg's own invaluable contribution to raising SPS awareness around the world. Read the story here
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
the headline banner (above) to go to her Facebook page, or click here
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
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 fewer 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: