This is the first newsletter of the European Congenital Heart group. This was sent out in January 2006 to those who had attended previous european conferences.
Since this has been published the ECHG has decided to write the conference guide itself, and this will be presented to the Tampere Conference in 2008 .
The ECHG Committee
Welcome! This is the first newsletter of the European Congenital Heart group. We are the 6 who were elected at the Open Hearts 2006 Conference in Norway to take forward the actions of that conference to make sure that adults who were born with their conditions work effectively as a team across Europe. All of those elected were born with their heart conditions, and have held, or currently hold significant roles in their national organisations This first edition of the newsletter shows what the group has done so far and introduces the 6, in their own words.
The Name, the Logo and the Website The choosing of a name and a logo helps any group feel like it has a clear identity. A sub-group, containing the creative people, worked out the best options for a name for the group and we all decided that ECHG was the best that other groups hadn’t already started using. The same creative group then came up with a series of possible logos, of which we liked this one the best. We hope that you like it too! We’ve also set up a website, www.echg.net where you can register for our newsletter, and other bits of news of what we are up to. As time progresses we’ll be turning this into a full website where you’ll be able to link to the national organisations across Europe, and beyond, and also find out what is going on in each of country. We’re also hoping that we can use this website to help people who’ve attended the European conferences to stay in touch, and to spread the information from these conferences to those not lucky enough to attend.
The Actions and What we’ve done so far In Skibotn, north of the Artic Circle in Norway the 6 of us were set 3 tasks as a group. These were: 1) To ensure the conferences keep running 2) To enable communication between conferences, by a website 3) To contact and monitor progress of the new cross-Europe parents and families group. The first of these actions is being done by the group managing the production of a guide to running a conference. This guide is being prepared for us by the Business School of Tampere University. We’re also pooling our knowledge about how to get funding, so that we can include this in the guide based on what we know works. The communications come through our notes to all expressing an interest, this newsletter and we are in the process of setting up a website. Each of these takes time to agree a format, what we want to say and to make it easy to use by both groups and individuals across Europe. The final action, talking to the parents and families group, we have begun by contacting the group that is being set up and swapping where we are up to in terms of organising ourselves. The parents and families group is also very young and feeling it way so we’ll be looking forward to working with them and growing with them in the future. Who Are We? For those of you who weren’t in Norway we thought it would be good to introduce ourselves… Hippu Pintilä I’m Hippu Pintilä, from Finland. I was born with CoA and I have been operated twice. I’ve been involved in the Finnish Association for Heart Children (now days Finnish Association for Heart Children and Adults) since I was child and I’m the founder of the GUCH branch in that organisation. I was one of the organisers of the Young Hearts ´98 Conference in Rovaniemi, Finland and now I’m organising the next international conference for the adults with congenital heart defect (in summer 2008 Tampere, Finland). I work fulltime as a HRD Manager and on my leisure time I enjoy hiking, travelling and good food with my spouse. My roles on the ECHG are to coordinate the group’s work and try to get some co-working with parent organisations and also to assure that the conferences continue. Peter Nieuwendijk My name is Peter Nieuwendijk. I am 42 years of age and i am from Holland. I am involved in these international conferences since 1994. In fact I was one of the organisers of the very first conference in Holland in 1994 and have been a participant ever since. In 2002 I had the honour of organising and hosting a second conference. And at present i have the honour of being a member of this committee. I have especially dedicated myself to do all that I can to ensure and secure the future of these conferences. This is because these conferences have proven their importance over the last 12 years. In private life i work at the largest Dutch bank called ABNAMRO, where I control and manage internal business accounts. My hobby’s are; my girlfriend soon (June 2007 ) to be my wife. I like to read old detective novels like Sherlock Holmes and Agatha Christie. I am a big Rolling Stones fan but have a very wide interest in music. Also I like to fish, play cards, travel, and off course keep busy with the conferences. Which I hope i will be able to continue to do for many years to come. Mark Maguire I’m Mark Maguire, from Glasgow in Scotland. I have been delighted to be involved with the Scottish Association for Children with Heart Disorders (SACHD)and its adult group, Bravehearts for ten years now. I was born with Transposition, but live a very full and active life supported by a host of medication! I’ve been really fortunate to represent Scotland at three European conferences (Edinburgh, Oxford and Norway). My involvement with Bravehearts and the European groups has introduced me to some of the best people in the world who have inspired and reached out to me. I am a people-person and that is exactly what drives my involvement and love for the heart groups. I have been a teacher now for six years and really enjoy my work! I direct two choirs (a school and Church choir) which is because music is so important to me, it seems to touch parts of our soul that nothing else can! In my “free” time I love socialising, playing piano (currently learning guitar), films, listening to music, travelling and meeting new people. I am part of both the Website and the Parents’ sub-groups within the committee. Claudia Franke Hi, I am Claudia Franke from Germany. I was born in 1975 with a simple heart failure (ASD and PDA), which fortunately made my life after having surgery until now without any problems concerning health. I do the marketing for the German national organisation JEMAH (youth and adult with congenital heart disease), including our website, the newsletter and our printed information like flyers and the members’ journal “JEMAH-News”. For the European committee of the ECHG I’d like to help with the website and other communication and information issues. In business life I own a little marketing company, which provides websites, classic advertising and almost everything concerning texts. While my company partner is independent concerning his choice of clients, I am specialised on the medical field, as I studied medicine and worked as a doctor for several years. In private I am happily married, hopefully having children one day. I like spending time with my husband, who is often not at home, make my 2 little tortoises even happier than they anyway are; I love surfing, chatting and playing on the internet, reading historic and crime stories, and playing darts.
Michiel van der Meulen My name is Michiel van der Meulen, I am coming from the Netherlands. I am 31 years old and I live in the North/West part of the Netherlands. In my daily job I work 40 hours a week at the office of an company that’s makes Security systems in all kind of buildings. We also making Camera security systems and telephone systems. My work is to preparing the work for the mechanics and doing the administration off the projects that are finished. My hobby’s are walking, especially in nature surroundings, Travelling (my next travel will go to Thailand for 3 weeks), Playing computer Games. My main task at the ECHG group is to work on the internet site. We want to make an interactive website for all off the groups in Europe. This is a website to connect the groups and to connect the GUCH people in Europe. We will hope that the site will be up and running before the next conference in 2008. Torben Geier I am Torben Geier, from Germany. I was born on January, the 5th 1978 in a small town called Unna, where I still live. I have studied modern history and politics and in the moment I graduate in modern history about “The image of Prince Bismarck in the English press.” I was born with a TGA. My first operation I had in the age of 9 months and until today two more operations followed. Besides my congenital heart disease I also have asthma. I am a member of the German self-help group for Grown-ups with a congenital heart disease. since 1999. In 2001 I became one of the two assessors in the managing board of JEMAH. In this function I visited my first European GUCH conference in Bilthoven, the Netherlands in 2002. One year later I was elected as chairman of JEMAH and I still am. In the ECHG I am responsible for the contact with the parent organisations and I am a member of the subgroup conferences. Paul Willgoss I’m Paul “Polo” Willgoss, from England. I was born with ToF, though being me it PoF (as I’ve 5 things wrong!). I’ve also developed diabetes, which means my previous love affair with chocolate is over :-( !!! I’ve been involved in the National Group for the UK, GUCH PA, for over 10 years. I’ve served on the Management Committee both as Secretariat and Vice-Chair and now am a volunteer working on influencing other organisations in the UK, who can help GUCH’s. I was one of the organisers of the Millennium Conference in Oxford, and continue to organise things in the UK like the GUCH Walks to celebrate the Adult Congenital Heart Day. Outside of GUCH PA, and the ECHG, I work fulltime as a civil servant and fill what time I have left with cooking, walking and generally trying to have some fun! My role on the ECHG is to pull together our notes to all those interested across Europe, and to draft the ECHG newsletter. What’s in the next edition? This is your opportunity! We need articles from across Europe: What is your organisation doing? What do you think should we should be finding out about across Europe? Let us know and we’ll do our best! The ECHG Committee Ps Happy Congenital Heart Disease Awareness Day on 14th Feb! |
