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home video news about what is it symptoms research information constitution committee about the site stories lindsey (nerri) berri liz vivian murphey craig pete david tanya links newsletters support testimonials contact print -- -- dr. scott newsome, do, department of neurology at johns hopkins medical on stiff person syndrome we have provided a link to dr. scott's excellent series of 4 videos on stiff person syndrome. we have provided a link to dr. newsome's excellent series of 4 videos on stiff person syndrome. commendation for liz blows at robinson college, cambridge. liz attended the cambridge rare disease summit in october 2017 with the hope of putting sps on the map. alastair kent obe, and head of rduk kindly said these words: 'meet up' for english sufferers of sps this is to be held at the brain charity in liverpool on 14th june. it is the first event of its kind in the uk. others at a later date will be held in wales, scotland and ireland. we hope to bring names to faces and for those who have never met another sufferer a chance to do so. perhaps long lasting friendships may develop. sps is the rarest neurological condition and i’m sure all will be swapping information. as anxiety is one of the symptoms, it may lead to someone having a spasm, but where better than where we all know how to handle the situation. rare disease day (feb 28th) liz went to represent sps on rare disease day at the house of commons 28/2/17. eurordis wanted all to smile for rare diseases on that day, and it was achieved. credit to rduk and josh tucker. pug art & griffon bruxellois group fund raises for the charity during september del dunderdale held an online auction for the uk sps charity. the pug art & griffon bruxellois group raised the following amounts: auction 1 total £32.00 + £20.00 donation = £52.00; auction 2 total £ 54.00; auction 3 total £146.00; auction 4 total £127.00. together with a photo competition which raised: £38.00. this reached a grand total of £417.50 the winning photo is of donna webster's pug. click on the photo to take you to del's personal fund raising page, which is with virgin, to raise funds for the uk sps charity. thanks go to all the group members involved in raising funds. liz attended the eurordis summer school for rare diseases. she made the following video, but the sound quality isn't good, so here is the transcript that include the statistics of other autoimmune diseases which people with sps suffer. the statistics are as follows; of 115 patients with sps. 64-iddm. 36-hypothyroidism. 12-vitiligo. 11-pernicious anemia. 10-sjorgens. they are the top five. now in no particular order, the others.iga neuropathy-2. asthma 2. ulcertive colitis 4. gastritis 1. dystonia-2. rheumatoid arthritis-3. raynards-8. lupus-4. ms-1. mgus-1. addisons-4. motor neuron-1. coeliac-9. hydradenitis-1. lichen sclerosis-1. psoiriasis-3. graves-3. myasthenia gravis-7. hashimoto's-4. cidp-1. polymyostis-2. discord lupus-1. osteoporosis-2. ankylosing spondolosis-1. exema-1. epilepsy-2. fibromylitis-1. cluster heasaches-1. ataxia-1. periferal neuropathy-2. horner syndrome-1. lichen plantus-1. orthostatic hypotention-1. psoriatic arthritis-2. pots-1. idiopathic urticaria-1. idiopathic neuropathy-1. hypogammaglobulinemia-1. sarcodosis-2. ibs-1. cerabella ataxia-1. postural bp-1. endrometriosis-1. burgers disease-1. litchtheim's disease-1. fibromyalgia-1. liz at the eurordis summer school - video dr scott newsome explains stiff person syndrome liz blows attends the rare disease day at the house of commons she relates: 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 2015 in 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 stiff person syndrome uk support and charity with liz and ang. jacqui atkinson has her book and story of her life with sps reviewed in a local newcastle newspaper.: read the full article in - the newcastle journal charity sets up video links 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 [email protected] . sps forum and facebook 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 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. getting in touch 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 01482 868881 secretary and founder: liz blows -- -- technical officer: john mcfall -- -- why not add a badge with the international ribbon symbol to your facebook picture from here: if you have any technical issues with this site please email here 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. to donate by paypal who take a small fee for thier charity service: -- for postal donations please download the form here . the group and charity was set up b

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http://www.smssupportgroup.co.uk/pages/en/testimonials.html
http://www.smssupportgroup.co.uk/pages/en/about_research.html
http://www.smssupportgroup.co.uk/pages/en/about_what_is_it.html
http://www.smssupportgroup.co.uk/pages/en/contact.html
http://www.smssupportgroup.co.uk/downloads/sps_donation_form.doc
http://www.smssupportgroup.co.uk/pages/en/about_site.html#disclaimer
http://www.smssupportgroup.co.uk/pages/en/about_symptoms.html
http://www.smssupportgroup.co.uk/videos/eurordis.mp4
http://www.smssupportgroup.co.uk/accessibility/print.jsp
http://www.smssupportgroup.co.uk/pages/en/about_committee.html
http://www.smssupportgroup.co.uk/pages/en/support.html
http://www.smssupportgroup.co.uk/pages/en/about_information.html
http://www.smssupportgroup.co.uk/pages/en/stories_liz.html
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