Beverley & East Riding GC supports Stiff Person Syndrome Charity March 14, 2012
Beverley Golf Club, arguably the oldest in Yorkshire, has joined forces with a local charity to launch a major new tournament for 2012.
The season-long Order of Merit contest, sponsored by the Stiff Person Syndrome Support Group and Charity, tees off in April in a quest to find the champion golfer at the course known as the Glorious Westwood, founded in East Yorkshire in 1889.
Stiff Person Syndrome (SPS)
SPS is a rare, auto-immune condition with a high number of sufferers in Hull and the East Riding. Currently incurable, in its early days it can seem as though sufferers have anxiety or depression, and many people are treated solely for this or similar disorders, but as it gets worse and the primary conditions take hold, it can cause severe rigidity, spasms and excruciating pain. Women appear most likely to fall victim. Find out more
Club captain Brendan O’Connor said at today’s launch: “This is a fantastic opportunity for members to take part in a brand new season-long championship that not only has great prizes but also supports a very worthwhile local charity.”
Just like Europe and America’s professionals in the Race to Dubai and the FedEx Cup, members can compete in the season’s major weekend events to challenge for the trophy.
Brendan added: “As far as I’m aware, our Order of Merit trophy is the first of its kind in this area. Members will be able to compete not just for the club’s biggest prize fund of the year, but also in a unique format, just like the professionals.
“The concept is broadly similar to our re-vamped Winter League which is proving a magnificent success with tremendous support from members. We hope everyone will support the Order of Merit tournament with equal enthusiasm.”
B&ER Club Captain Brendan O'Connor
and Charity Secretary Liz Blows
Liz Blows (59), founder and secretary of the Beverley-based SPS charity, said: “Raising awareness of this horrible condition is the charity’s primary aim so joining forces with the club to provide a major new trophy should be of huge benefit to all concerned.”
The OoM trophy is the first major new competition launched by the Westwood club in more than a decade. Points will mean prizes for members as they battle for the title with its magnificent silver trophy, with 13 further winners sharing a total prize fund of more than £400.
If the competition proves successful, the club hopes the SPS charity will continue sponsorship of an enlarged contest in subsequent years. Brendan said: “This is very much a test season to see how members respond to a very different tournament concept to the usual one-off format of other competitions.
“To that end, we are limiting the OoM championship to the summer’s 18 major weekend competitions. It is open only to men over 18, but if it proves as successful as we expect, we will develop the tournament in 2013 to enable all members to take part.”
The minimum £5 entry fee will be a one-off charitable donation. Mrs Blows, of Normandy Avenue, said: “We are a small charity with limited funds so we’re hoping members will dig deep for a worthwhile cause.”
Brendan added: “For the cost of a pro’s better ball, a drink and a snack, members can compete in the club’s biggest tournament. That’s what anyone would call a very good deal! More importantly, it helps the charity and, hopefully, will justify future sponsorship. I’d like to see members dig even deeper than £5 if they can because everyone will benefit in the short and long term.”
Order of Merit Format
• Competition to run during the summer season 2012 (full list of qualifying tournaments below)
• Open to all male members over the age of 18
• No handicap limit
• Entry fee: (minimum) £5 charitable donation to the Stiff Person Syndrome Support Group
• Prize Fund: Total - £410:
1st £100 + Order of Merit Champion title,
• Nine further age-banded prizes, prizes as follow in each banding (tbc): 1st £30,
• One prize per person, 14 prizes in total
• Points are awarded based on a player’s position among OoM competitors in each event (ranked using competitor’s “net score”), plus a bonus point for every shot under par, eg: if the leading OoM player in a competition scores 64, and 100 OoM players take part, he will score 100 points + 5 points (for being 5 under par), a total of 105 points.
• Players tied will receive the same number of points, eg: if 3 players tie on 64 for first place in any given competition, and there are 100 OoM competitors, each receives 100 points + 5 points.
• Each player scores points from up to a maximum of 10 of their best scores from the 18 qualifying competition. NB: unlike Winter League, there is no minimum number of entries.
• No returns or no cards submitted: no points.
• Competitors’ scores automatically processed, no further action required by players at any time during the season.
• Regular updates/results available on the notice board and on the club’s website.
• April 29 - Agnes Gilby Cup
• May 6 - Hall of Fame Medal
• May 12 - Stableford
• May 13 - Veterans’ Cup and Medal
• June 3 - Centenary Cup
• June 9 - Medal
• June 16 - Captain’s Medal
• June 23 - President’s Putter Round 1
• June 30 - President’s Putter Round 2
• July 7 - Robinson & Fraser Round 1
• July 14 - Robinson and Fraser Round 2
• July 21 - President’s Medal
• August 11 - Stableford
• August 12 - Muir Cup & Medal
• September 1 - Second Division Championship & Medal
• September 8 - Medal Winners’ Final & Medal
• September 9 - Bogey Competition
• October 13 - Tom Mitchell Quaich
About Stiff Person Syndrome (SPS)
SPS is a rare auto-immune condition with an extremely high number of sufferers in Hull and the East Riding.
The reason is simple – it is difficult to diagnose and there are few specialists in the UK, but one of them, Dr Alec Ming, is based in the city.
The charity has 120 “members” in its UK and Ireland catchment area, 14 in the county alone. That’s almost 12%, whereas the region accounts for barely 1% of the UK’s estimated population of 62 million.
“It can take years for sufferers to get the right diagnosis – and even then it’s the luck of the draw whether people are treated by doctors who even know what SPS is, never mind what to look for,” explained Mrs Blows.
“We are very lucky – if lucky is the right word – to have Dr Ming in our neck of the woods. Without him, there would be a lot of people suffering needlessly because of this awful condition. Including me”
Mrs Blows, a former nurse, set up the charity in 1998, after presenting symptoms of SPS, or Stiff Man Syndrome as it was originally called, in 1990. It was a slow onset and it took three years before it became clear there was something seriously wrong and a further four years before she was diagnosed.
“It’s such an insidious and incurable condition, easily confused with all sorts of other problems because of the way it shows itself. In its early days, it can seem as though sufferers have anxiety or depression and many people are treated solely for this or similar disorders. It can be hell for the individual because as it gets worse and the primary conditions take hold – severe rigidity, spasms and excruciating pain – they often don’t know where to turn for help.”
This led Mrs Blows to set up the charity with the express purpose of raising awareness and providing comfort and support for sufferers. “It’s a long, long, slow road because it’s so hard to diagnose and there are so few experts anywhere in the world,” she said.
But it’s a battle she continues to fight as she’s convinced that there are many more sufferers than the medical profession thinks. One reason for this belief is the link between SPS and diabetes. Nearly 50% of the charity’s members are Type 1 (insulin-dependent) diabetics; of the 2.6 million diabetics in the UK, 260,000 are Type 1.
“It doesn’t take a rocket scientist to realise that even if there’s been no research to conclusively prove a link, the coincidence is far too extreme to dismiss. I have no doubt there are a lot of people out there suffering needlessly in frustrated silence because they don’t have experts to diagnose their condition and get the medication they need to ease what can be excruciating symptoms.”
Stiff Man Syndrome 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. SMS/SPS or 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 SMS/SPS.
It’s 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. The onset is most frequent between the third and fourth decades of life.
Apart from her primary role in the charity, Mrs Blows is compiling a list of neurologists who know about SMS/SPS to ensure any callers who present with the symptoms can tell their GPs to whom they should be referred. Another on-going task is a questionnaire in the hope that medical research will one day be undertaken to illustrate how SMS/SPS progresses over the years.
Women appear most likely to fall victim to SMS/SPS. The age range is wide, with some victims presenting in their teens. However, the majority are aged 30 and over. SMS/SPS has many variants. Sadly, there are no specific tests to determine which variant a sufferer has; it can only be determined in the way the condition presents and progresses. Classic SMS/SPS develops gradually over time and has no cure. Drug treatment, such as diazepam and baclofen are the first line treatments.
In simple terms, everyone has an immune system that helps ward off infections. We also have an auto-immune system which, when compromised, in effect becomes our enemy. It sees a part of our own bodies as alien and begins to destroy it. Most sufferers appear to have at least one other auto-immune condition. The most common is Type 1 or insulin-dependent diabetes (IDDM).
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