Dedicated SPS Facebook Groups
Click on the links below to take you to various SPS Facebook group pages. If you have more links, please contact us at:
Stiff Person Syndrome UK and Ireland Support Group and Charity official Facebook page and hosts of this website. Established in 2011, it's a private group with the primary aim of: "Support of those suffering from Stiff Person Syndrome."
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Stiff Person Syndrome - Education & Support (USA) is a private Facebook group created in 2011. It changed name in 2016 and again in 2022. Its mantra is: "Support and education in a safe, drama-free environment."
Set up in 2011, the private group SPS - Moersch & Woltman - Stiffman has the mission statement: "Support for the condition Stiff Person Syndrome." In addition, it is a group that will: "...help bring people living with Stiff Person Syndrome together in new ways."
A USA-based Facebook site called Stiff Person Syndrome Support Group set up in 2012, re-named Stiff Person Syndrome - SPS in 2019. It is an open public group set up to: "Raise awareness for a rare neurological disease called Stiff Person Syndrome (SPS). ALL posts are visible to all Facebook users regardless if you are a member of this group."
Sindrome della persona rigida o di stiff-man (Italia) is one of the earliest Facebook groups. It's a public group and was set up in Italy in 2012.
Stiff Person Plus / PERM is a USA-based private Facebook group set up in 2012 for suffererers of the rare variant of SPS called PERM (Progressive Encephalomyelitis with Rigidity and Myoclonus)
Stiff Person Síndrome Brasil is the new name (2022) of Stiff Person Syndrome Brasil or Stiff Person Síndrome / Síndrome Da Pessoa Rígida, a private Facebook group set up in 2014 for South America's largest country. The condition's Portuguese name is Síndrome da Pessoa Rígida.
Stiff Person Syndrome Action Network is a private Facebook page established in 2014. It is: "A group of people with SPS united in taking the actions necessary to spread the word about this rare disease to the world. The purpose is to get the acknowledgment this disease deserves & to offer assistance to all sufferers who need it ... it's time for the silent suffering to end."
Our SPS and Rare Disease Blessings and Struggles is a private USA Facebook group set up by Joy Dansby Charrier in 2014. Her goal and mission is: "... to help, whoever I can from a Christian perspective ... to share our triumphs and defeats, our happy times, our sad times, and share helpful, knowledgeable, information about this disease."
* Stiff Person Syndrome UK * is a private UK Facebook page created in 20214
Stem Cell Transplant for Stiff Person Syndrome is a private Facebook group set up in 2014 "created for the purpose of having an exclusive forum for individuals with Stiff Person Syndrome who are interested in learning more about stem cell transplant as a treatment option."
Stiff Person Syndrom Norge is a private group created in 2015 in Norway to "help each other with good advice and help to understand this diagnosis. We have different experiences and may learn from each other."
SPSA, the Stiff Person Syndrome Association, is a private group established in 2015 with the aim of: "Drama-free Stiff Person Syndrome support," and the message: "Be kind to each other, support each other and educate each other."
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SPS Warriors SPS is BS (Beyond Suffering) is a private Facebook page based in the USA. Founded in 2015, it is: "Dedicated to helping others, aiding with resources, furthering our non-profit organization so that we may also provide financial help to others with Stiff Person Syndrome in horrendous situations. We want to help others experience joy, support, financial help and stability during their time with this disease."
Living Our Best With SPS was originally set up in 2015 as SPSers/MWD`s Fighting On Through Exercise. Name changed March 2019. It is a USA-based private Facebook group. Mantra: "Our aim is to provide a non-competitive positive motivating environment for people living with SPS. Providing inspiration and hope by fighting back through exercise."
Stiff Persons Syndrome is a USA-based public Facebook group set up in 2015.
Stiff-Person-Syndrom: Wenn du einer von eine Millionen bist is a German private Facebook group set up in 2016 by Frank Kleine who has PERM.
Jäykkyysoireyhtymä (Stiff Person Syndrome) is a Finnish private Facebook group set up in 2016 by Mari E Kiuru.
Sindrome de la Persona Rigida o Stiff Person (SPS-SPR) is an Argentinian private Facebook group set up in 2017 by Buenos Aires-based Gabriela Suarez.
CURRENTLY UNAVAILABLE. SPS Plus PERM Syndrome. UK Support Group is a private Facebook group set up in the UK by Leigh Knowles in 2017. The name changed in 2021. Says Leigh: "I needed to raise awareness and try to meet other people who have this horrible condition ... so I created this page in the hope it would help myself and others."
SPS Sisters is an American private Facebook group for women only. It was set up in 2017 with the mantra: "Strives to empower, educate and encompass an encouraging community".
Ashley's Fight With Stiff Person Syndrome Support Group is a private Facebook group created in 2017 by Ashley Moore Swanson.
Stiff Person Syndrome Association (Jerking Stiff Person Syndrome) (USA) is a public Facebook group created in 2018 specifically for sufferers of one of the five main sub-divisions of SPS. Motto: "Together we can educate people AND doctors together!"
Arizona Friends With Stiff Person Syndrome is a USA private Facebook group set up in 2019 for sufferers in Arizona as a "safe place to connect and share with others who understand your joys and challenges." Tara Ross and Chasity Baxley Seegars are Admins.
Stiff Person Syndrome Support Group is a private Facebook group created in 2019 by Heather Brown.
SPS & Rare Disease Warriors is an American private Facebook group set up in 2020 by Christine Marquez, a motivational speaker who works to spread awareness of SPS and other rare diseases.
Support for Adolescent or Young Adults with Stiff Person Syndrome is a private Facebook group set up in 2020 in the USA by Meghan Bayer because "so many teens and young adults struggle with understanding and eventually accepting that life just goes on."
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A private UK Facebook group, Stiff Person Syndrome (SPS) ... Forget-Me-Not was set up in 2020 by Nerrick Whittington with the mantra: "A kind, happy, safe, joyful, supportive space to share positive energy.... to reconnect with your soul.... to know the power of your thoughts.... to refuel your life with clarity and wisdom..... and to replenish your physical body with calm and serenity."
Set up by Dr Tara Zier in 2020, The Stiff Person Syndrome Research Foundation works to broaden awareness and raise money for research that will lead to better treatments and a cure for SPS.
Rajesh Kumar is an Admin for Stiff Person Syndrome - Australia, which was set up in 2020 with the mantra: "Dedicated only for people with Stiff Person Syndrome or SPS. We're special and we're only one in a million. If you're one please feel free to join the group to help each other out and also share."
Men With Stiff Person Syndrome is a UK private Facebook group set up in 2021 as an "open page for men who can discuss SPS and how it affects them ... a private place to learn from other men things we would not say in Mix Company."
GAD Negative Stiff Person Syndrome launched in May 2022 to cater for sufferers who are GAD negative. It was created because "GAD negative SPS patients take longer to diagnose, are less aggressively treated, often have more difficulty being taken seriously, and no one wants to find the root cause of SPS beyond looking at GAD numbers."
Stiff Person Syndrome Support Group. USA public (private from January, 2023) Facebook group set up by Shanon Malan in 2022.
Sindrome de la persona rigida - Stiff person syndrome España is a Spanish Facebook group set up in 2022. There is an associated website set up in 2021 Asociación Española del Síndrome de la Persona Rígida