Rare Disease Day 2012: How to Get Involved.

February 29, 2012 marks the fifth international Rare Disease Day. On this day hundreds of patient organisations from more than 50 countries worldwide are organising awareness-raising activities converging around the slogan "Rare but strong together".

Today is Rare Disease Day. It's a great opportunity to get involved with the day and help raise awareness of Hypermobility Syndrome. You can do this by doing the following:

1. Watch and share the official Rare Disease Day video www.rarediseaseday.org/solidarity.
Also read about the stars of the video including Jamie's story, he has Ehlers Danlos Syndrome Hypermobility Type.

2. Register as a ‘Friend of Rare Disease Day’ on our website and ask your partners to do the same! Almost 300 people have signed up already!

3. “Tell your story” about yourself or someone you know who is living with a rare disease. Upload a photo or a video to www.rarediseaseday.org/yourstory/photo.

4.  Join Rare Disease Day Facebook group.

5.  Follow Rare Disease Day on Twitter.

6.  Remember that the theme of this year’s campaign is “Solidarity” and the slogan is “Rare but strong together!” For more information on how to download the logo and other communication material, go to www.rarediseaseday.org.

It's not too late to get involved if you read this post after Feb 29th.  You can still take part and do as many as the above points as you like.

Lets all come together for Rare Diseases Day around the World.

EDS UK Fashion Show Fundraiser

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

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 – 19/7/08/11 on 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

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

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

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.