Thanks to all those who were involved in our pram push in the park.  We raised over £1300 which was great!

See http://www.thisisbath.co.uk/news/Mum-bids-raise-funding-training/article-2415655-detail/article.html for the write up.

In coordination with the Katy Turner pram push fundraiser, we’re running a three-legged race around the same course in Bath’s Victoria Park.  Here’s a fantastic chance to get your kids involved in the fundraising – they can ask their friends to sponsor them and take part in their own fun activity.

If you can get along to the event on 11th July then please come and support us.  If not, why not organise your own event instead!

Summer’s here and it’s time to take advantage of the weather to raise some funds.  This is exactly what one of our members, Katy Turner, is doing in her local city of Bath.

Katy’s daughter Emmeline is three and was diagnosed with Ebsteins at birth. Since then Katy and her husband Ed have joined the Ebsteins Society and are now organising our first summer fundraising event in 2010 – a sponsored pram push in Victoria Park in Bath.

We would love you to support this event either by coming along or sponsoring Katy (click for details), or perhaps you could organise you own event! – see our fundraising page for ideas.  Of course, we always welcome direct donations to The Ebsteins Society!

It is one year since the launch of our website, and time to recap on what we have achieved – and what we would like to achieve in the future.  Here is what we have done:

ebsteins.org helps train heart surgeon in new ebsteins technique

Massimo with Dr da Silva and Dr Luciana Da Fonseca and their son

In June 2009 we held a fundraising barn dance and charity auction in Bradford-on-Avon, Wiltshire and raised a total of £2, 100.  With this money we part funded Massimo Caputo (heart surgeon at the Bristol Children’s Hospital) to go to Brazil and spend 5 days with Dr Da Silva, the eminent cardiologist who pioneered the ‘cone surgery’ techniques.  During the 5 days Massimo watched 5 different Ebstein’s operations, all very different and he looks forward to putting these into practice in the UK.  At present, to our knowledge no other UK hospital currently offers the cone technique as a method of repair, although the short term and mid terms results of this have been very successful, see this research paper or have a look at the Illustrations of Da Silvas cone technique.

Jose Pedro da Silva

Read more about the Massimo trip here.  

Importing techniques such as these to the UK is extremely important, so that those with Ebstein’s can be offered a range of choices and options.  Whilst the U.S. commonly employs the cone repair, it is not offered to those in the UK.  Smaller numbers of people with Ebstein’s (smaller population) and a large number of UK hospitals dealing with this condition inevitably means that surgical expertise and experience is relatively low compared with the US.

Learning the cone technique

We wish to build on this important step, disseminating the technique to others, and continuing to develop the skills of surgeons such as Massimo.

You can help us achieve this by getting involved with ebsteins.org.

Fantastic first year achievements

In the first 12 months of our website launch we have recruited 167 members, had over 20,000 page views and have climbed from 18th to 3rd in the google search for Ebsteins.  Not bad, considering that Ebstein’s Anomaly is such a rare condition.  There have been some really touching comments since we started, and it seems the site has been a great support for some of you.  Please revisit the various blog areas to engage with the conversations on different subjects, and if possible load up a photo (avatar) of yourself so that other members of the community can see what you look like!

Keep the support going

Research into the conditions of Ebstein’s is notoriously underfunded, as it affects such a small segment of the population.  However, to those affected by Ebstein’s, understanding more about the condition it is crucial, for example is it genetic/ hereditary?  We need help to fund an epidemiological study in conjunction with Bristol children’s hospital.  Our target is to raise £40, 000 to pay for a clinical researcher for 12 months to establish the size and nature of the problem of Ebstein’s in the UK.  We have already had offers of help to do some fund raising, can you help?

ebsteins.org helps train heart surgeon in new Ebsteins technique

Learning the Cone Technique

Ebsteins.org has part funded leading Ebstein’s Anomaly heart surgeon Massimo Caputo to go to Brazil and spend 5 days with Dr Da Silva, the eminent cardiologist who pioneered the ‘cone surgery’ techniques (see here for Illustrations of Da Silvas cone technique).  During the 5 days Massimo watched 5 different Ebstein’s operations, all very different and he looks forward to putting these into practice in the UK.

See more about the Massimo trip.

BCH under threat?

According to an article in The Daily Telegraph up to half of the country’s specialist heart surgery units for children face closure under controversial Government plans.  The plans follow recommendations about new safety standards, effectively having fewer hospitals but with a greater concentration of expertise.

Add a comment to tell us your view.

We’ve taken on board some of the helpful comments made about ebsteins.org by reworking the Discussion forum.

This useful forum for sharing knowledge and experiences has proved more popular than first imagined and time has shown us which areas were particularly important to you.   The time had come to change the structure of the categories, as well as adding some new categories and removing some old ones.  We hope the new structure is clearer, easier to use, and will encourage even more dialogue.

Please register as a member to submit posts to the Discussion forum on subjects that interest you.  Non-members can only submit comments.

The MiCardia Corporation of Irvine, California has announced the completion of the first U.S. implant of its Dynaplasty mitral valve repair technology.

MiCardia is developing Dynaplasty® technology for the treatment of structural heart disease, focusing initially on mitral and tricuspid valve disorders and as a method of interrupting a major element in the onset and progression of Heart Failure.

The full new item can be found here.

Poet Rebecca Goss talks on the BBC’s Womans Hour about the death of her daughter Ella at the age of 16 months from Ebstein’s Anomaly.  You can read more about Rebecca’s appearance on Womans hour on the BBC website, where you can also listen again to the broadcast itself.

We’re pleased to announce that our first fund-raising event on 6th June 2009  “The Big Charity Barn Dance” raised just over £1600 !

The event was a lot of fun and enjoyed by all, and we hope to make this an annual event.  The funds from the barn dance will be used to send a surgeon and a cardiologist from Bristol Children’s hospital overseas to learn how to perform the surgical intervention called the ‘cone technique’, which currently is not available in most UK hospitals.

This is the first of many fund raising events, but we need you all to get invoved and do your own fund raising too.  We now need to raise some funds to do a studywhich will show exactly how many people in the UK have been  diagnosed with Ebstein’s, and which will start to look at some of the complex factors around these cases, so we can learn more about the condition.

£1600 is a great start, but please get involved and help with your own fundraising ideas. to help us raise more.  Alternatively, you can always contribute on our donations page.

We’ve today added a useful paper on the results of surgical intervention on 539 Ebstein’s Anomaly patients to our surgical intervention research page.

This new website will be a fantastic resource to all those affected-by or involved-in the heart condition known as Ebstein’s Anomaly.  The site will provides a means to share information, discuss how to deal with the condition, provide the latest research news, and give links to experts around the world.

A collaborative effort between concerned parents and medical practitioners, the site has the valued support of Mr Massimo Caputo MD, Mch Consultant in Paediatric and Adult Congenital Surgery and Dr Andrew Tometzki MB ChB, MRCP, FRCP Consultant in Fetal & Peadiatric Cardiology both of Bristol Children’s Hospital.