Events
Informal Gathering / Meeting in the Ashling Hotel, Dublin on 12th June 2010
Past Events
Informal Gathering / Meeting in the Ashling Hotel, Dublin on 12th June 2010
Guests: - Nurse Rhona Savage, Specialist Marfan Nurse, Mater Hospital, Dublin. and Professor Mark Redmond Cardiac Thoracic Surgeon, Mater Hospital, Dublin and Our Lady’s Childrens Hospital, Crumlin, Dublin.
Welcome to join us for lunch at 1p.m. followed by informal chat between 2p.m and 4.30p.m.
Families with children are very welcome Refreshments providedDublin City Women's Mini Marathon - (Christina Kennedy)
On Monday, 1st June, 2009, myself, my mum and four other friends took part in the Women's Mini Marathon on a beautiful sunny day in Dublin.
We had a great day and met many other people participating for many deserving charities. As we all know with Marfan Syndrome being so rare, we got asked quite a few times 'what it was all about'.
We finished the day off by having a few sociable beverages in Drogheda and a well deserved meal.
We collected 1310 euros, we are very grateful for people's generosity and hope it helps the Support Group continue their great work.
A big 'Thank You' to all the walkers - Mum (Bernie), Catherine, Peggy, Geraldine and Veronica. We hope to convince a few more to join us next year!
DONATION FROM AVRIL FEENEY
A big thank you to Avril Feeney who made a donation of 160 euro for Marfans. This was part of the proceeds of a charity Xmas raffle between the staff and associates in Homeless Services Section (DCC/HSE) in Parkgate Hall.
MARFAN SYNDROME SUPPORT GROUP A.G.M UPDATE
We held our A.G.M. on October the 31st 2009 The venue was the usual place ; Ashling Hotel, Park Gate Street, Dublin 4, Time of the A.G.M. was 2.30p.m. - 4.30p.m.
Guest speakers were be : - Member of the Cardicac Paediatric Team OLHSC and Speaker from Heartchildren Ireland
The 2009 AGM was delighted to welcome Kathleen Crumlish, Cardiac Clinical Nurse Specialist, (Paediatrics), from Our Lady s Hospital for Sick Children who gave a very comprehensive presentation about Heart Disease in children. She gave a very interesting insight in the workings of the heart and what can go wrong and also in the type of treatments available at present.
Margaret Rogers, the CEO of Heartchildren Ireland was a wonderful addition to the AGM this year. She gave us a fascinating overview of Heartchildren Ireland and how they help so many parents and children who are dealing on a daily basis with heart disease and heart defects. The Heartchildren Ireland website is a wonderful fountain of knowledge for parents and there is also a beautiful link on the website called "HEARTSPLAY" which describe heart defects and problems and what goes on at hospitals in a children friendly way. This website and organisations are doing great work and we at the Marfan Syndrome Support Group would advise any parents who have children with Marfan Syndrome and the related heart issues to check out this group.
The Heart children Ireland website is www.heartchildren.ie and well worth checking out
MARFAN SYNDROME OPEN DAY
We are holding an "Open Information Day" in Castlebar, Co. Mayo, on the 10th of October 2009.
It will be held in the Days Inn Hotel, Lannagh Road, Castlebar.
The time of the Open Day is from 2p.m. - 6p.m.
Anyone interested in finding out more information about Marfan Syndrome or those looking for support are welcome.
Refreshments will be served throughout the afternoon.Read a letter from Petronella Canty Chairperson Marfan Syndrome Support Group >>
Night of Giving Nov 11th 2008
On Nov 11th 2008, a “Night of Giving” was organised by Scotch Hall Shopping Centre in Drogheda Co. Louth. They organised a ticket only event to an evening of shopping with discounts, fashion shows, raffles, spot prizes, refreshments and celebrities. Tickets were sold by local charities for the event with all funds raised going to the charity. Ann Marie O Rourke, Jackie Cassidy, Christine Kennedy and Jo Gore raised €540 for the Marfan Syndrome Support Group IRL
29th June 2008 Kilimanjaro Challenge:
My name is Brendan Walsh, I am 54 years of age and I live in Dublin, I hill walk for recreation and occasionally climb mountains with a group from the west of Ireland.
Last November I was invited to join a group of fifteen on an adventure to Kenya to climb Kilimanjaro. I never tried anything so adventurous as this before so I started to train to a higher level of fitness. I also started thinking about what charitable organisation I could raise funds for to make the challenge more interesting and rewarding.
I didn’t have to think too long about which organisation to support as we are very familiar with Marfan Syndrome and its effects on our own family. My late brother Gerry and my sister Patricia were diagnosed with this condition when they were five years old, as problems with their eyesight started to develop even at this early stage in their lives.
Our brother Gerry developed an aneurysm in the aorta which wasn’t detected and unfortunately resulted in his death at the age of 38. Our sister Patricia suffers from many of the effects of Marfans, including aortic aneurysm, emphysema, lens dislocation, detached retina and hernias.
Marfan Syndrome is described as a connective tissue disorder. Connective tissue is the cement that connects and holds the body together and is present in every organ, blood vessel, bone and joint in the body. When this connective tissue is defective it can affect all or some of the following: eyes, aorta, heart, lungs, bones and joints.
Marfan Syndrome is a rare condition and as a result the vast majority of people will not be aware of it. However we are very lucky in that we have a research centre of excellence based in the Mater Hospital in Dublin headed by Professor J. Mark Redmond.
All of the funds raised will be directed towards further research into Marfan Syndrome under the direction of Prof. J. Mark Redmond in Dublin Ireland. All of the trip expenditure is privately funded to enable 100 % of the collected funds to go directly to Marfan research. Donations are tax deductible.
We greatly appreciate your support for this very important research.
For further information on the Kilimanjaro challenge you can contact Brendan Walsh on: 087 2582815 or email brendan@bwdesignworkshop.com
