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
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.
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
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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.