On the 25th February I attended a reception at the House of Commons. It was held by Rare Disease UK. I was there as a representative of SPS.
The first speaker was Liz Kendall MP, the shadow minister for the "care of older people and care of rare diseases". She spoke about the problems families have when caring for someone with a rare disease, and the fact that one in three family members has to give up work.
Earl Howe, the minister in charge of rare diseases spoke next. He said this reception was one of the "landmark events of the year". He spoke about Genomics England: There are now 11 new genome centers in the UK. They are trying to build a lasting legacy which will make this country a world leader in diagnosis and treatment of rare diseases (he reported that there are 6,000 known rare diseases).
Fiona Marly was the last speaker. She is the head of Highly Specialised Services for NHS England. She spoke in depth about her role, also talking in detail about genomics England's clinical interpretation partnerships (GECIP).
There are 3 million people in the UK who have a rare disease.
There are 80 Countries around the world that now have a Rare Disease Day (February 28th).
Credit for Earl Howe's photo to Rare Disese UK. Liz Kendall's photo taken from Flickr.
Golf News: Renewed Sponsorship of Major Tournament in 2015In our on-going campaign to raise awareness, the Charity has once again agreed to sponsor, for the fourth year running, Beverley Golf Club's premier competition, the Order of Merit for 2015 (pictured are charity founder Liz Blows and 2014 champion golfer Darren Smith). In each of the first three years, around 160 golfers have taken part, contributing almost £500 every year, which is now the charity's main source of income. The tournament begins in April and runs through to October with a total of 38 events at the East Yorkshire Westwood club. You can read about past events on the Order of Merit Golf Tournament Page
The image can be downloaded or linked on a web page. Changes can be made, e.g. Logos etc. can be used to create a new image to promote your own SPS fundraising.
To download: click on the ribbon - right click on the ribbon - Save image as...
The designer has donated the image and design to the world-wide SPS community and has put it in the public domain. The designer has requested that the work does not need to be attributed to them.
The Ribbon can be used in any legitimate SPS campaign to raise awareness or raise funds for registered charities. The original should be large enough to print on T-shirts and the like. Text can be easily added to customise the design. We would ask that no non-charitable funds are made from anythying incorporating this design.
Donations are flooding in for a once active mum of three who hopes to raise enough money for a life-saving operation, after living with a one-in-a-million condition that has left her bed-bound
Lindsey, who is known to many as Nerri, has a wish, and that is to have the gift of time, the chance to live. She has had many successes with her illness. The doctors are now running out of ideas and resources. Follow her blog on the following link:
Brave Scottish Sufferer Featured in Daily Express
Yet another SPS victim is featured in a national newspaper, further raising awareness of the condition. You can read all about 70-year-old Vivian Murphy's story.
The Pen is Mightier than the Sword: New Book about SPS
SPS sufferer Jac Atkinson, full name Jacqui Atkinson, is now a fully fledged, published author. Jac has toiled for a number of years writing a book that features her struggle with SPS. It has now been released and is available on Amazon. This unique perspective is yet another weapon in our awareness-raising arsenal for our little known and often misunderstood (and mis-diagnosed) condition. Find the book on Amazon by searching for "One in a Million by Jacqui Atkinson." In Britain it is at: Amazon..
Video records of SPS/SMS-related topics are now online to show the world how the condition affects sufferers. Click here.
The Videos are also accessible from the "Links" menu.
If you would like us to host or link to your SPS related Videos please contact us at firstname.lastname@example.org.
Welcome to your refreshed and invigorated new-look SPS Support Group website. Presentation, content and navigation have been significantly improved to enhance the user experience. The site is very much a work in progress - keep checking in the coming months to see what's new, different or simply given a new lease of life. If you have any ideas, views or comments, we'd love to hear them. After all, this site is about, and for, YOU.
Apart from the ever-evolving look and feel of the site, we have further boosted our reach by the creation of a discussion Forum and, most recently, the addition of our very own Facebook page, together with a number of other innovations to help us keep pace in the ever-changing modern world. Please find time to fully explore our website and discover all it has to offer in the never-ending campaign to raise awareness of SPS at home and around the world.
Membership of the group is restricted to UK and Ireland residents only, although we’re always pleased to hear from fellow sufferers, their families and carers around the world (see Links) and our presence on Facebook means we are within reach of everyone in the global community.
You can email us, ’phone on the dedicated SPS Support Group telephone number or click the ’phone link to use Skype, and also find us on Facebook
This site is 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 as well as advocates for the condition and the General Public.
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.
The group and charity was set up by Liz Blows with the following as it's aims:
(1) The relief of sickness and the protection and preservation of the health of persons affected by Stiff Person Syndrome and their families and carers.
(2) The advancement of the education of the medical profession and the general public into Stiff Person Syndrome and its implications.
(3) The promotion of research into the causes, effects, treatment and management of Stiff Person Syndrome and to disseminate the useful results thereof.
"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 also become known as "Stiff Person Syndrome" (SPS). SPS does not appear to differentiate between sex, colour, or creed, although UK evidence tends to suggest women are more likely to fall victim to SPS.
SPS is a neurological condition believed to be of auto-immune origin. It is unique among neurological diagnoses due to its lack of significant similarity to any other neurological diseases. Although rare, once observed it is quite unforgettable. Because of its rarity, many neurologists and GPs are not aware of the condition. In most cases, the first symptoms are insidious and victims are often initially misdiagnosed with anxiety or depression. The onset is most frequent between the third and fourth decades of life.