Providing information, resources and support for those affected by Turner Syndrome
Welcome to the TCGI Newsletter.
This is the first electronic version of our Newsletter. We hope to publish regular snippets of information of interest on this page. We are open to suggestions, so if there is anything you would like information on, please let us know.
Fiona.
Saturday 6th March 2010, Naas, Co Kildare
Our Annual Conference & AGM this year moved from Dublin to the neighbouring county of Kildare. We had a great turn out of adults and childen. It was an informative and interesting day, with three guest speakers cover a range of topics. There was also plenty of time to meet and chat with others throughout the day.
The presentations are available in our DOWNLOADS section
The 7th International Turner Syndrome Conference was held on 27th -30th August 2009 in Copenhagen, Denmark.
A group of six from Ireland attended this year's conference. As a group we found it beneficial in many ways and highly enjoyable! It was wonderful to meet so many people from so many different countries just to chat and get to know one another. The last international conference was held in Australia in 2003 and a group from Ireland also travelled.
Speakers included:
Dr. Claus Højbjerg Gravholt from the hospital in Aarhus, Denmark
Heart Study, in relation to Turner Syndrome
Dr Line Cleemann from the hospital in Hillerød, Denmark,
Turner syndrome in childhood and adolescence - a multifaceted state of health
The Turner Contact Group Ireland (TCGI) annual general meeting was held on Saturday, 21st February 2009 in the Clarion Hotel, Liffey Valley, Dublin. The event was very well supported, with around 60 attendees - both adults and childen - joining us for the day.
Irene Gerety, Osteopath, gave an informative talk on "The Benefits of Osteopathic Therapy" with particular emphasis on the benefits for children. Jessica Sheppard, Paediatric Dietitian spoke about "Nutrition and Turner Syndrome". And TCGI chairperson Fiona Jones, herself a Primary School Teacher, gave a talk on "Turner Syndrome and Education".
Copies of the presentations will shortly be available on the downloads section of our website.
We would like to thank Nancy Hickey and her husband David for putting together our new website. As it is new, it is very much still a work in progress and we would be open to suggestions as to what it should contain and any articles people wish to add to it would be very welcome. We will officially launch the website at this year's AGM and we will have the opportunity to chat about it then.
A few adult members of our group took a trip to France in August and it proved a great success. They met up with a few girls from the Turner Support Group in England as well as quite a large group from France. They went on trips in the Brittany area and the Irish contingent headed to Paris for a few days. It was great meeting up with the other groups and was an enjoyable trip for all. The following is Christine's account of the trip.
As is now tradition, last year we went away together to
Kilkenny. Someone suggested that
for this year’s trip we take a house in France, great idea. So we sent an email to the French
Turner group telling them what we were planning with the English group and
maybe we could all join up. Before
we knew it they had found a house in North Brittany for 20 people !!!!
So, on the 16th August, Niamh, Paula and myself set off,
destination Port Blanc, a small village just north of Lannion. We left Dublin Airport for Stansted
where we joined our three UK friends.
From there we flew on to Dinard.
On arrival in Dinard we hired a 7 seater car. Wow, a big, big black one with blacked out windows!! Every gadget and Gismo available. Even a button which made the pedals
longer. Don’t worry I wasn’t
driving, Niamh was our brilliant driver for the week. I was just navigator, a job made very easy as we even had
Sat. Nav. So once we worked
out what all the gadgets were for, we set off for Port Blanc, I had been told
less than 2 hrs drive!!! Why
didn’t I start the Sat Nav then!? Anyway by the time we got North of Lannion it
was already getting dark and we drove around all the lovely country roads
before we found the house at 11pm.
So much for my navigational skills. The next day I made sure to get the Sat Nav working.
We had a lovely time with them all. Sampled French and Breton cuisine. One evening “Les Minipus” did the cooking for everyone. Another night we did the cooking, on
the menu was “Irish Franglais stew”.
Well we couldn’t not marinate the meat in some nice red wine, I mean we
were in France after all. Of
course we finished up with Irish Coffees, well the adults, we resisted the
pleas from the teenagers!!!
Apart from that we spent the week cruising around in our
big car and saw all the local sites.
We went horse riding, visited the Ile de Brehat. Sometimes in a convoy of 3 cars when we
all went. And to be fair the
others got lost too. The
signposting on these small roads is just about as good as the signposting in
some parts of the west of Ireland!
Christine.
The world’s largest all-women sports event with over 40,000 women took place on Monday June 2nd along the streets of beautiful South Dublin where women walked, trotted, jogged or skipped the 10km mini-marathon on a fantastic summer’s day.
Thank you to all who took part in this year's Dublin Women's Mini Marathon on behalf of TCGI. The total raised was €1200. This money is greatly appreciated by the group as it is one of our most important fundraising events of the year. It helps to fund our A.G.M. and other expenses we have during the year. We hope to have a group participating this year again particularly as the international conference is coming up in August.
If you are interesting in participating in the 2009 Dublin Flora Women's Mini Marathon and raising sponsorship for TCGI, please contact us at info@tcgi.ie Christine Podger will have sponsorship cards at the AGM for anyone wishing to participate. There will be more information at the AGM.
Our AGM. last February was well attended and enjoyed by all. Their were many topics of interest to all. Miriam Fallon, endocrine nurse, gave a talk about current practice in growth hormone treatment. Patricia Kennedy, Sticks and Stones, did a workshop about bullying with the children and teens. Valery Kelly a family counsellor gave great advice to parents on how to help their child deal with Turner Syndrome and had some helpful tips for the adults too.
Dr Edgar Mocanu from the Human Assisted Reproduction Unit, Rotunda Hospital took us through the fertility options for women with Turner Syndrome. This was very informative and helpful to all while bearing in mind continuing medical research and advances. Trainers from the Icon Fittness group kept the children and teenagers moving while Joy Needham gave us tips in makeup and beauty to keep us looking our best.
