Hypermobility Fundraising & Awareness Campaign

EDS UK Fashion Show Fundraiser

2011-10-28T13:32:00.000-07:00

Sunday 6th November 2011, 3 - 6pm
Foundation Bar, Covent Garden, London

An exclusive Fashion Show featuring Models with Ehlers Danlos Syndrome. Raising funds and awareness for sufferers of Ehlers Danlos Syndrome. Tickets are £25 and include the following:

*A Glass of Champagne on arrival.
*Afternoon Tea being served throughout the event. Including:Tea, Coffee, Soft drinks, sandwiches, cakes, biscuits, cupcakes, eclairs and more!

EDS UK will be selling their literature and merchandise including their new wristbands, T Shirts and medical cards. There will be a number of stalls including:Dolly Dinky jewellery who has been styling the X Factor Finalists, Cazcarra Cosmetics, bags, notebooks, and various other gift and clothing goods.

The day is being hosted by The Very Simon G who has just been voted the Cosmopolitan male fashion blogger of the year. They have signed goodies from celebrities and TV Shows amoungst other amazing raffle prizes and goody bags.

Buy your Tickets Here

Russell Kane - His Hypermobile Joints & Stretchy Skin on TV

2011-10-27T15:11:00.000-07:00

The British Comedian Russell Kane has mentioned being double jointed and demonstrated his stretchy skin on a number of UK TV Shows recently including the following:

Daybreak – 08/09/11 on ITV1
Watch Here on ITV Player
Ref Point: 1:30 to 2:08

8 out of 10 Cats – 19/7/08/11on Channel 4

Watch Here on 4oD
Ref Point: 19:34 to 19:50

Transcript I took from the Daybreak Interview:

After not getting his luggage back yet after just returning from holiday, Adrian Chiles: "What are you missing?" Russell Kane: “One of the main problems is I’ve got no foot arches. So I’m dependant on my foot arches. I left them in my luggage so I’ve got 2 days till I can walk!” He shows his cursed wedding shoes (from his failed wedding); he does this by pulling his leg up to his lap to show off the shoes to the camera. Adrian: “You're ever so bendy!” Russell: “I’m double jointed, that’s what the flat feet are related to. It’s also stretchy skin, look at this” He stretches the skin on his face, freaking out the production team, Just before that he briefly shows his hypermobile hands for a moment.

A couple of months ago I followed Russell Kane on Twitter (@Russell_Kane). I was surprised when I tweeted him to ask it he was hypermobile and he replied “yes”. Russell is a daily user of Twitter and it’s great that he frequently replies back to his fans. He is busy touring the UK at the moment with his Manscaping Tour. Hopefully his frequent mentions on TV of being hypermobile and stretchy skin have prompted many viewers to Google about these attributes. This would inevitably lead to web pages about Hypermobility and Ehlers Danlos Syndrome, hence spreading awareness.

To find out more about Russell Kane including his Live Tour Dates visit http://www.russellkane.co.uk/

EDS UK News & New Celebrity Patron

2011-10-26T08:21:00.000-07:00

EDS UK have been busy since they relaunched with a new name and branding earlier this year. They now have a new office and helpline that runs Monday to Friday with 2 staff members Lara Bloom, Development Manager and Ellie Moss, Office Administrator. They have new products available featuring the EDS UK logo including a Medical Alert Card, T Shirts and Wristbands. To purchase any of them get in touch with the office on 0208 736 5604 or email lara@ehlers-danlos.org

Cherylee Houston, EDS UK Patron

In their current edition of Fragiile Links EDS UK announced that they have their First Patron, Cherylee Houston (Coronation Street Actress). She became the first full-time disabled actress on the soap. The Charity says " Not only is this a fantastic representation for disabled people everywhere, it is even more special for us, as that the disability that Cherylee suffers from, both in the soap, and in real life, is Ehlers Danlos Syndrome." No doubt this is fantastic opportunity to raise awareness of EDS and raise the profile of the Charity.

Backwards Piano Featured on The Tonight Show

2011-10-25T14:41:00.000-07:00

After the huge success and media interest in Evan Petrone’s YouTube Backwards Piano video, the 19 year old University student (who has EDS Hypermobility Type) was contacted by a talent coordinator from The Tonight Show. As a result he was offered the opportunity to showcase his unusual talent on the The Tonight Show with Jay Leno on the 28th September. He featured on a segment called “Will this thrill Bill?” — Bill is William Shatner from the original “Star Trek” TV series. Unfortunately he didn’t have an opportunity to mention Ehlers Danlos Syndrome as it was a very short interview and they wanted to keep the show upbeat. He said that the experience was fantastic and he got the celebrity treatment! Viewers in the US and Japan can watch the show Here.

Evan is keen to use future opportunities to gain public awareness for Ehlers Danlos Syndrome which is such a little known disease. I will keep you updated if he has any other TV appearances lined up. He has also decided to post a new version of his Backwards Piano with the sole purpose of raising awareness of Ehlers Danlos Syndrome. You can watch the video Here.

You can find Evan's Facebook page by visiting Evan Petrone (Backwards Pianist)

October HMSA Fundraising Update

2011-10-25T10:36:00.000-07:00

There has been an astonishing amount of EDS/HMS news to report on over the past few months. As a result this will be split over a number of posts in the next few days to keep you up to speed on what’s be going on.

Paul Chick who took part in the Ironman Wales Challenge on 11th September completed in an amazing time of 12 hours 48 minutes and 4 seconds. He has done the HMSA proud as he has now raised over £1,000 for the Charity which will help to make a difference.

Jim Russell whose wife suffers from Hypermobility Syndrome chose to support the HMSA buy taking part in Bupa Great Birmingham Run 2011 on Sunday. He says: “I don't run. The biggest run I have ever done is 5k, back in 1990. I've turned 40, and mid-life crisis has hit me like a brick. So that is why I am running a half marathon.” He completed the event in 1hr 46 mins and has raised just over £200 so far which is fantastic news.

Donations can be made securely at: http://uk.virginmoneygiving.com/JimonbikeRussell Or click on the Virgin Money Giving banner at the top of the page.

You don’t necessarily have to do something active to raise money for your chosen EDS/HMS Charity. You could do a whole host of things such as holding a coffee morning, baking and selling cakes, holding a sponsored silence, hosting a Charity Ball, Dress Down day at work, Book Fair, Car Boot. The possibilties are endless! Contact the charity you want to support to get a fundraising pack.

US Student becomes Internet Hit Playing Piano Backwards!

2011-09-10T11:44:00.000-07:00

Irecently discovered via Twitter that US student, Evan Petrone who filmedhimself playing the Coldplay song Clocks on piano has become an Internetsensation. This doesn’t sound anything unusual until you discover that he can dothis by bending his arms backwards and using his hands behind his back to playthe piano! This feat could only bepossible by the fact that he has Ehlers Danlos Syndrome (Hypermobility Type).In his case this enables him to rotrate his shouldersout of socket and play the piano backwards. Many people who have viewed thisfind it quite shocking, unbelievable and some comments even state how cool itwould be do to be able to do it!

Some people who suffer with EDS may feel this underminesthe condition but I look at the positive aspects. The Video has attracted over450,000 views and Evan’s story has been reported around the world. Most importantly Evan says: "I feel badgetting attention for my EDS, because I literally have the fun kind. I knowpeople who suffer chronic pain because of their EDS and live very restrictedlifestyles."

Paul Chick - Ironman Challenge for the HMSA - 11th September 2011

2011-09-10T10:24:00.000-07:00

Paul Chick is a regular on the Triathlon Circuit and lives in South Wales, UK. For the first time he is taking part in the Ironman Challenge in Tenby, Wales on September 11th 2011 to raise money for the Hypermobility Syndrome Association. Unlike normal triathlons the Ironman Challenge is a much bigger version and has to be completed within a specific time (16 or 17 hours). It involves a 2.4 mile swim at sea, 112 mile cycling over very hilly terrain and finally a 26.2 mile marathon to finish!

Paul has been training hard for this event he has raised over £600 so far with just 1 day to go. Please show him your support and help raise vital funds for the Hypermobility Syndrome Association. Donations can be made securely at: http://uk.virginmoneygiving.com/PaulChick

You can also help support Paul’s challenge by sharing his fundraising page on Facebook and Twitter by using the Share Page menu at the bottom right of his page.

The HMSA Big Bash Plymouth - Sat 28th May

2011-05-26T00:20:00.000-07:00

Saturday May 28th, 3 - 10pm
The Staddy Function Centre, 144 Stadiscombe Road, Plymstock, Plymouth. PL9 9LT

If you haven't got anything lined up for this bank holiday weekend then why not go along to the HMSA Big Bash!

It's a great chance to meet up with friends and make new ones. There are some taster sessions from the Body Shop and a reflexologist. Buffet food is also included in the price of your ticket.

Don't miss the raffle which includes some great Prizes such as tickets to Legoland, Next & Amazon Vouchers and Signed Cookery Books from the Tanner Brothers (James Tanner on Saturday Kitchen).

There is a secure outdoor childrens play area and children's activities will be provided.

Ticket Info: HMSA Adult Members 14 & above - £10 2 -13 years £5.50. Non Adult Members £15
Order your Tickets via the Paypal button here.
Email admin@hypermobility.org with the following details: Name, address, contact no, tickets required and names and ages of all those attending.

Santander Bank Matches Funds Raised for the HMSA

2011-05-21T09:55:00.000-07:00

This week a Journalist from the Times is taking part in a Wheelchair Challenge which involves her being confined to a Wheelchair for an entire week. She is doing this to raise money to buy a Electric Wheelchair for her friend Clara Holmes who has Ehlers Danlos Syndrome.

**Laura Westcott has now raised the £3,000 needed for the Wheelchair. Santander Bank are going to match all further funds raised (beyond £3,000) to the HMSA charity. Therefore for every £1 of sponsorship she gets until tommorrow night the Hypermobility Syndrome Association will get £2.25 inc. gift aid.**

Donations can be made Here with Virgin Money Giving.

You can follow her progress on Twitter and YouTube

Photo: Laura is pictured working at her desk this week at the Times Newspaper Office.

June HMSA Bristol Meeting

2011-05-19T05:00:00.000-07:00

The next Bristol HMSA Group Meeting is being held in June. Please feel free to bring partners/family/children/friends along. The Venue has great parking and disabled access/toilets and is wheelchair accessible throughout.

For details on the time, date and venue see the HMSA Forum, under general support and chat, click on local groups. This is a password protected area and you need to be registered with the forum to access it. Alternatively contact Angharad at: bristol@hypermobility.org if you would be interested in attending the next meeting.

News in the EDS World - May

2011-05-17T02:13:00.000-07:00

I have been amazed by all the buzz and news surrounding the world of EDS recently. This is particularly welcomed as May is officially Ehlers Danlos Syndrome Awareness Month. Why not do your bit by doing something such as: spreading the word about EDS to friends or online via social networking websites, display posters or leaflets in your local hospital or doctors surgery, do a fundraising event for a EDS/HMS charity or if you want to really stand out post a video on YouTube and spread EDS awareness around the world! For inspiration go no further than the great new video created by Carrie Beckwith called Living with EDS which you can watch above.

There were many comments online last month following the House: Season Seven, Episode 18 'The Dig'. This featured a woman who had a major problem with hoarding and had suffered miscarriages and was told that these were caused by her diagnosis of Ehlers Danlos Syndrome! Apparently no further explanation was given about the condition leaving a very narrow and extremely poor view for the majority of viewers who know nothing about about EDS.

On the UK fundraising scene there has been lots going on including Lara Bloom's amazing triumph of completing the Virgin London Marathon in April which has raised almost £10,000 for the charity EDS UK. Also Emma Richardson, who along with her mum bravely had their heads shaved for charity last year presented their large cheque recently . They raised £2,500, half of which went to the Hypermobility Syndrome Association (HMSA) and the other half to their local village defibrillator fund which paid for 2 defibrillators.

I'm sure that many of you like me are eagerly awaiting the release of the forthcoming book called A Guide to Living with Hypermobility Syndrome by Isobel Knight who herself has EDS. I will be particularly interested to read about the pain management methods mentioned in the book including the use of Pilates and complementary health therapies.

I have been busy making improvements to this blog since the beginning of the year and this appears to have paid off. The number of hits to the site have doubled since last year with an average of 300 hits a month which is amazing. I am always trying to find new content and I reguarly trawl the web for the latest articles that feature EDS. It always suprising to find the number of sites and forums that mention the condition. I certainly remember 10 years ago (When I was diagnosed with HMS) that there was hardly anything on the internet that I could find out about the condition.

Access to information and meeting other people with EDS on the web has opened up massively with the imergence of social networking websites over the past few years. This is such a great thing for this condition as it has created a large EDS/HMS community online where others can give there support and advice and we can do so much more to spread awareness than ever before.

Bristol Meeting a Great Success

2011-05-07T13:33:00.000-07:00

The Meeting held today was a great success. A total of 13 people attended at the new venue in Bristol even if a couple of you found it a little tricky to find us! Everyone liked the modern layout and feel of the venue and it was given the thumbs up for ease of access with not a ramp or step in sight!

It was great to meet some new people from the area and we all had a good chat about all things EDS and much more besides. This was my third meeting since moving to Bristol and I have really enjoyed sharing experiences and discovering new things about the local treatments and services available that people have used.

Lara Bloom raising funds for EDS @ London Marathon - 17th April 2011

2011-04-14T15:03:00.001-07:00

Lara Bloom is taking part in the London Marathon this weekend. She has Ehlers Danlos Syndrome and is thought to be the first person with this condition to take part in the Marathon.

Lara will be raising money for the Ehlers Danlos Support Group, a charity she now works for.

She has been training hard for this event since last year despite set backs caused by having Ehlers Danlos Syndrome. She Says: "When I walk, everything hurts, but I have an incredibly strong mind," she said. "I see it as a daily battle and I like to win it. The marathon is just another fight."

Lara has raised just over £8,000 so far and hopes to reach her target of £10,000. The money raised will be used to raise awareness of the condition and find a cure.

If you would like to help out with Fundraising on the day then you can join the EDS UK Marathon Bucket Collection, feel free to bring family and friends along too. Meet at 10.00am onwards at: The Feathers Pub 18-20, Broadway, Westminster, London, SW1H 0BH.

Any donation no matter how small will help Lara reach her target for the London Marathon. Every penny counts! Donations can be made securely at: http://www.justgiving.com/larabmarathon

Body Viz: Amazing 3D MRI Body Scans - Look to the Future

2011-02-09T13:18:00.000-08:00

Soon all medical scans will look like this and incredibly, your family GP can create them with just a laptop and an X Box controller! Surgeons can look at different parts of the body such as veins and bones, and they can turn the image through 360 degrees.

As BodyViz software relies on widely used computer gaming technology, it costs only £4000. It could be available to UK GPs within the next 2 years. This is could be valuable for anyone with Hypermobility Syndrome, for early detection of complications such as early onset of osteoarthritis in joints, disc prolapse, tissue damage and organ problems.

Full details can be read in a article in the current issue of the UK Reader's Digest Magazine. View the Article Here

Easily Missed? Joint Hypermobility Syndrome in the BMJ - 20/01/11

2011-01-29T16:35:00.000-08:00

A New article called Easily Missed - Joint Hypermobility Syndrome has been recently published in the British Medical Journal. It is written by Juliette Ross G.P. & Prof. Rodney Grahame, a Consultant Rheumatologist who runs one of the few Hypermobility Clinics in the UK.

It makes for any interesting read and highlights the reasons why many people with the condition go un diagnosed for years. This is partly because the article states that in a survey of "319 UK consultant rheumatologists, only 9% of respondents believed that joint hypermobility syndrome and the hypermobility type of Ehlers-Danlos syndrome were the same condition. Furthermore, 46% of respondents were sceptical about a serious impact on people’s lives and 72% about a serious contribution to the overall burden of rheumatic disease." The article goes on to point out why diagnosing Hypermobility Syndrome as early as possible is important to avoid further possible injures or complications.

It's good that the article has already generated 2 responses from other medical professionals stating other problems that can point to Hypermobility Syndrome.

View the Article Here

Rare Disease Day 2011 - 28th Feb 2011

2011-01-24T15:26:00.000-08:00

Register now to ensure your place at parliamentary receptions to mark Rare Disease Day 2011

Rare Disease Day is marked internationally on the 28th February and RDUK is responsible for coordinating activities in the UK. The purpose of Rare Disease Day is to raise awareness, both among policy makers and the general public, to call for rare diseases to be seen as a health priority and to provide a voice for people with rare diseases and their families.

Rare Disease UK will be holding four parliamentary receptions across the UK to bring all those with an interest in rare diseases together to highlight the issue to politicians.

At the events Rare Disease UK will also be launching our report outlining recommendations for a strategy for rare diseases, cumulating a year and a half of work gathering evidence.
They will be holding receptions on the following dates:

Scottish Parliament – 22nd February 6:30pm – 8:30pm
Westminster – 28th February 4pm-6pm
Northern Ireland Assembly – 3rd March 12pm-2pm
Welsh Assembly – 16th March 12pm-2pm

Please note: you MUST register in advance to attend these events.
To register please send your name(s), address and contact email/telephone number to:
Scottish Parliament event – scotland@raredisease.org.uk Natalie Frankish - 0131 651 4805
Westminster or Northern Ireland Assembly event – stephen@raredisease.org.uk Stephen Nutt - 020 7704 3141
Welsh Assembly event – cope@cardiff.ac.uk Buddug Cope - 02920 687 646

There are other ways to get involved in Rare Disease Day including writing to your politician(s), participating in media work or organising your own awareness raising activities.

More information about Rare Disease Day can be found at: http://www.raredisease.org.uk/

EDS UK Re-launch Cocktail Party 27th Jan 2011

2011-01-24T14:33:00.000-08:00

Thursday 27th January 2011, 7 - 1am
Studio Valbonne, 62 Kingley Street, London
An exclusive Evening to re-launch of EDS UK. Raising funds and awareness for sufferers of Ehlers Danlos Syndrome. Tickets are only £40 and include the following:

*A free cocktail on arrival and two complimentary drinks of your choice during the evening.
*Beautiful complimentary food being served throughout the evening- A red carpet with celebrities confirmed - rub shoulders with the stars on this very special evening with all funds going to a very worthwhile cause.

* The first UK performance from Katie Melua in 2011
* An exclusive DJ set with the famous William Orbit
* An incredible auction with sensational prizes.

Buy your Tickets Here

The must see event of the year!

Receive your FREE Thermacare Heatwraps

2011-01-24T14:18:00.000-08:00

ThermaCare pain relieving heatwraps provide effective relief of muscular and joint pains associated with overexertion, strains, sprains and arthritis. They are self-heating and provide 8 hours of constant warmth for long lasting relief.

They are specially designed to be comfortable and easy to wear under normal clothes, and are odourless and non-greasy. They can be used anytime - day or night, even while sleeping.

The free wraps are for use on the lower back. Let us know how you get on with them. We got ours a few days after ordering. Click here to order your free wraps.

NEW BOOK "You know you have Postural Tachycardia Syndrome when..." by Hannah Ensor

2010-02-26T16:59:00.000-08:00

New publication out now called "You Know you have Postural Tachycardia Syndrome (POTS) when...." by Hannah Ensor. Follows on from her book "You know you have Hypermobility Syndrome when...."

Buy it now for only £5.00. From the sale of each book £1 will be donated to the Hypermobility Syndrome Association (HMSA) and £1 to the Association of Young People with ME (AMYE).

The book will help your friends and family better understand your condition and make you laugh at the same time!

Order your copy here

Ehlers-Danlos Syndrome Awareness Month Petition

2010-01-26T12:59:00.000-08:00

An online petition has been created to make May Ehlers-Danlos Awareness month in the US. This will help spread awareness in the general public as there is currently a great lack of understanding and knowledge of this complex and "invisable" condition. It only takes a moment to sign the petition so please show your support and let your friends and family know about it aswell.

Online petition - Make May Ehlers-Danlos Syndrome Awareness Month

Voting closes in 2 months time.

06/04/10 - 1024 signatures so far. Your votes are still needed, it only takes a moment.

EDS Network CARES Wins $25,000

2010-01-26T12:29:00.000-08:00

Congratulations to the EDS Network CARES Foundation. They were amongst the top 100 charities voted for in the Chase Community Giving project on Facebook. The charity came 23rd out of the top 100 charities and received a massive 10959 Votes! As a result they received $25,000 Thank you to all of you that voted. Visit their website to find out about the important work that they do.

Appeal: Your Used Postage Stamps

2009-12-08T15:09:00.001-08:00

Collect your used stamps to raise funds for The Hypermobility Syndrome Association (HMSA). You can drop off your used stamps (bagged) at the Presteigne & Norton Community Shop in the High Street, Presteigne or at the Drill Hall.

Also let your friends, family and employer know that they can save them aswell.

If you prefer you can post small quantities to:

Mr Rapley
Foxglove Cottage
Bookham Street
Great Bookham
Surrey
England
UK
KT23 3BX

Please note `The HMSA' on the back of the envelope when sending.
Stamps from Overseas supporters are also welcomed.

Singers & Bands Charity Quiz

2009-09-28T12:40:00.000-07:00

The HMSA Singers & Bands Charity Quiz is now closed. £10 gift card for the winner. £1 per entry. This proved to be a very popular quiz and we received alot of entries.

Congratulations to Mrs S Davies from Norton, Powys who won the Quiz.

The total amount raised will be announced shortly.

So far we have raised £430 for charity. Congratulations to Mrs Rae from Bridport, Dorest who won the British Food & Drink Charity Quiz.

Walk for Skin Event 17/05/09

2009-05-26T14:18:00.000-07:00

On Sunday 17th May 2009 I took part in the Walk for Skin 2009 at Coombe Country Park, Coventry, in aid of the British Skin Foundation and the Ehlers Danlos Support Group. It was a very rainy day but fortunately it brightened up for the walk itself. I am pictured with the Mayor of Coventry, Councillor Andy Matchet who officially opened the event.

I would still be grateful for any donation that you can give to help reach my target of £150. I have currently raised £120 so far.

A big thank you for all of you that have supported me for this event.