About This site

Introduction

The Stiff Man Syndrome Charity web site uses the more widely used term "Stiff Person Syndrome" (SPS) throughout the site. The charity itself is named after the original name used by Moersch and Woltman who discovered the condition.

TheStiff Man Syndrome Charity website provides information on SPS, personal accounts and research findings.

Our audience includes people living with SPS; caregivers and their families; care professionals and researchers; SPS advocates; and the general public.

The Site "Stiff Person Syndrome, the Official UK and Irelend Support Group," (smssupportgroup.co.uk) provides general information about SPS, and does not take the place of professional medical advice, diagnosis or treatment. If you have noticed possible symptoms of SPS in yourself or someone else, please see a doctor.

Content on our site is written by the Charity members.

We do not accept or host paid advertising on the Charity's site, www.smssupportgroup.co.uk. The Charity and its website is supported by the generosity of our donors.

Permission to use material from this website / reprints / copyright

The Stiff Man Syndrome Charity retains copyright on the content of this site, unless otherwise noted.

Reprint or reuse of information from this site without change

To request permission to use information from this website, send an email describing intended use, duration and contact information to admin@smssupportgroup.co.uk

Translations and adaptations

Translations or adaptations of Stiff Man Syndrome Charity content must be reviewed and approved by the Stiff Man Syndrome Charity committee. Please send an email describing intended use, duration and contact information to admin@smssupportgroup.co.uk

Using content from Association press releases

Reprint of Stiff Man Syndrome Charity content or references to Stiff Man Syndrome Charity contact information in an organization’s press release must be approved by the secretary of the charity. Please send queries to Liz.Blows@smssupportgroup.co.uk

Logos

Using any of the logos without the charity’s prior consent is strictly prohibited. Please send written requests describing intended use, duration and contact information to admin@smssupportgroup.co.uk.

Photographs and graphics

The photographs and graphics on our website are not available for reproduction by third parties.

Linking policy

When linking to the website, web managers should be aware that the logos are not available for posting or replication on third party websites without a written agreement with the charity. See "logos" above for detsils.

Disclaimer

The Stiff man syndrome Charity works to ensure that the information provided on its official website is accurate, timely and useful. However, the information contained on the Stiff man syndrome Charity website should not be considered medical guidance or professional advice. The Stiff man syndrome Charity, its affiliates or agents, or any other parties involved in the preparation or publication of this site are not responsible for errors or omissions in information provided on this site or any actions resulting from the use of such information. Visitors are encouraged to confirm the information contained herein with other reliable sources and to direct any questions concerning their personal health to appropriate health care professionals. Corrections and additions to this site will be made when necessary or as time permits.

Security and privacy policy

The Stiff man syndrome Charity is committed to protecting your privacy when you visit our website. Information we collect from you is used to improve our site, provide you a better experience, respond to your questions and process your online donations.

Information collection

We collect two types of information on our website:

  1. Web server traffic information. This information is used to determine the number of visitors to our site, length of stay and sources of traffic. We collect aggregate data — or totals of those visiting from a domain — not information identifying individual users. We use this information to help improve our site and our service to you.

  2. Personal information provided by you. We collect email addresses and other personal information only when you provide it to us. If you fill out a form or survey, request information or make a donation, we may collect your name, address, city, county, post code, telephone number and email address.

Use of personal information

The Stiff man syndrome Charity collects information on our website. We do not sell, trade or rent our website visitor’s personal information to others other than those outlined in this section. If you willingly provide us your personal information, the Stiff man syndrome Charity may use it in the following ways:

Donations. When you make an online donation to us, it’s possible your name may be on some mailing lists shared with other reputable organizations. As a donor, you may request to have your name removed from these mailing lists. See the Your Choice section below to learn how.

Email Information Requests and Questions. When we respond to your email requests or questions, we may collect your email address and send youStiff man syndrome Charity email bulletins or news. To opt out and remove your name from future emails of this type, follow the unsubscribe instructions in the message.

E-News: When you sign up to receiveStiff man syndrome Charity e-news, we collect your email address and may also notify you about other information we think you will find valuable. To opt out and remove your name from future emails of this type, follow the unsubscribe instructions in the message.

Event Registration. The charity provides online registration for our major events, such as the education and research conferences.. We may collect your email address and send you Stiff man syndrome Charity email bulletins or news. To opt out and remove your name from future emails of this type, follow the unsubscribe instructions in the message.

Forum. Please remember that any information you disclose on the Forum becomes public information.

Your consent

By using theStiff man syndrome Charity website, you consent to the collection and use of the information described above. Any changes to this policy will be posted prior to their implementation.

Your choice

We respect your privacy and recognize that you may wish to limit the ways in which we contact you. Simply send an email to liz.blows@smssupportgroup.co.uk with the following information:

  • To remove your name from mailing lists shared with other organizations, please provide your full name, mailing address and a sentence requesting removal.

  • To remove your name from the Stiff man syndrome Charity's postal mailing list, please provide your full name, mailing address and a sentence requesting suppression of your personal information in our files.

  • To review or correct your personal information with the Stiff man syndrome Charity, please provide your name and a sentence requesting a review or a correction.

Security

We take every precaution to protect your personal information. At the Stiff man syndrome Charity, your personal information is kept confidential and stored in a secure environment. Access to your information is restricted only to authorized staff with a legitimate and specific business purpose. For example, our finance employees need access to information to process online donations. If you have any questions about the security at our website, send an e-mail to admin@smssupportgroup.co.uk.

Cookies

A cookie is a piece of data sent to your Web browser and stored on your hard drive. Cookies help us improve our website by tracking and targeting the interests of our users as they visit different sections of our site. Cookies do not contain any personal information.

Log files

We use IP addresses to analyze trends, administer the site, track visitors’ movements and gather broad information for aggregate use. IP addresses are not linked to personal information.

 

 

 

Stiff Person Syndrome.

This site is solely for the support of those suffering from Stiff Person Syndrome (SPS). Family and friends of sufferers are also welcome to the same support. The site may be of interest to caregivers, care professionals and researchers, together with advocates for the condition and the general public.

Donations

We always welome donations, no matter how large or small. You can donate on-line or via a donations form.

To donate by secure credit card transaction, please use the button below. The full value of your donation (less credit card fees) comes to the charity.

BT MyDonate  

 

The group and charity was set up by Liz Blows with the following aims:

(1) The relief of sickness and the protection and preservation of the health of persons affected by Stiff Person Syndrome, together with their families and carers.

(2) On-going education and awareness-raising within the medical profession and the general public of Stiff Person Syndrome.

(3) The promotion of research into the causes, effects, treatment and management of Stiff Person Syndrome.

"Stiff Man Syndrome" (SMS) was the name assigned to the condition when first identified in the 1950s by Moersch and Woltman in the USA. In recent years, in the modern world of PC, the condition has become more widely known as "Stiff Person Syndrome" (SPS). SPS does not differentiate between sex, colour, or creed, although UK evidence tends to suggest women are most at risk.

SPS is an auto-immune neurological condition. It is unique due to its lack of significant similarity to any other neurological diseases. Although rare, once observed it is quite unforgettable. However, many neurologists and GPs are still unaware of the condition. In most cases, the first symptoms are insidious and victims are often initially misdiagnosed with anxiety or depression.