The Erbs Palsy Association
Charity registration number CHY13096
Tel: 086 66 66 200
We have e mailed members about the Friends & Family Day if you have given us your email address -
Please click here to download a copy of our newsletter, where you can catch up with our events, get some handy hints and useful information.
Committee members will be contacting members requesting their email addresses in the coming weeks. We need email addresses for ease of and for more frequent communications with members. We would greatly appreciate it if you would co-
New members for 2010 are John Hurley,Chairman and Cliodhna Doyle. Sheila Rice and Jacinta Colreavy have retired from the committee.
The event was held in the Ashling Hotel, Dublin on 10th October and was well attended. There was an informal approach to proceedings this year. The main priority was to get members focused on the Association's priorities for the immediate future and to re-
Amongst the priorities identified was the need to renew contact with Obstetricians and with the CRC. There is some unease that not all parents of new born Erbs children are being informed in time by maternity hospitals as to the condition the child has. There have been recent developments in the treatments on offer for Erbs children and the committee hope to engage with these devlopments through new committee members who are parents of young Erbs children. Renewing contacts with the CRC will also assist in this work.
Prevention or minimisation of injuries caused in future cases of Erbs births has arisen again as an issue. It is likely that the committee will try to make contact again with the main maternity hospitals to see what standards are now operated in those hospitals. The ultimate objective will be to get a common standard practice of the highest quality in all Irish maternity hospitals for dealing with shoulder dystocia incidents.
If the Association wishes to progress research into any medical aspect of Erbs Palsy it will be necessary to engage in more intensive fund raising. The Women's Mini Marathon 2010 is a good starting point. Anyone thinking of taking part in the Mini Marathon is asked to consider the Association as a deserving recipient of funds raised while taking part in the event.
Some parents are anxious about informing schools about the Erbs child's needs but there is advice in the Educational Issues page of this website on this matter.
Sheila Rice has decided to leave the committee after years of excellent service and her commitment was recognised and appreciated by the members present. Three new committee members who are parents of young Erbs children will bring energy and drive to our work in 2010.
The arrangements in the Ashling Hotel were excellent.
On Saturday 19th April 2008 we held a Members Day meeting in the Glenroyal Hotel, Maynooth. There was a very good attendance, including a few new members. There were two main speakers on the day. At 11:30 a.m. Paul O' Donoghue, Senior Clinical Psychologist, Central Remedial Clinic, Dublin spoke on the topic of the concerns parents have that there may be a link between Erbs Palsy in children and learning difficulties. This is an issue that has become a focus of attention for a number of parents over a period of years. Parents had sent in questions prior to the meeting and these were given to Paul to deal with on the day.
In dealing with the question of a possible link between Erbs Palsy and learning difficulties Paul explained that, while no studies on this matter have been published, he is satisfied that the causes of Erbs Palsy injuries are not the same as those that lead to children being born with learning difficulties. This was not a view that everyone present accepted easily and there was a very lively debate on this issue with parents asking many questions on the topic. In the end we ran out of time for Paul to deal with all the questions and it was agreed that we would resume the discusssion in the autumn. It was agreed to choose a Dublin city venue close to the city centre and close to transport terminals. all members will be advised of the new date and venue and we will carry the information on this website also.
The second speaker was Johan Verbruggen. Johan was asked to speak to parents as a young person who has lived his life with the worst category of Erbs injuries. He has gone through the natonal and secondary school systems and is currently in his first year at Galway Unversity. Johan recounted how he had coped well with the Erbs injuries and that he felt that the support he got from his parents had been very valuable to him while he was growing up. He now feels very self confident in dealing with everyday things and he is optimistic that his future is bright. While life with Erbs has been a challenge in many ways the challenges have not been insurmountable when the right attitude was adopted. Johan answered questions from parents about his different experiences in dealing with different life situations and he impressed them and gave them reassurance about their own growing Erbs children in his answers.
The event finished at 1:30 p.m. and the Association provided lunch for children of parents present. During the meeting they had been entertained to a high standard by Artzone, a Dublin based group specialising in such entertainment. Once again the general view of those in attendance was that the day was very interesting and that it was very worthwhile making the effort to attend.
The photgraph below shows Fiachra Murtagh and Denis Sweeney planting a Maple tree in the grounds of the CRC, Dublin. This event took place on 14th April and it was the choice of the committee that we should mark the Association's 10 years existence by planting a living symbol of the growth of our impact in dealing with Erbs Palsy in Ireland. The CRC site was chosen because of the huge contribution their Erbs clinic has made to the early assessment and treatment of Irish children born with Erbs Palsy in recent years. The management of the CRC Erbs Clinic and their team of professionals made a special effort to attend the ceremony and they were delighted with this symbol of recognition by the Association of their efforts to help children born with Erbs Palsy.
Also included above are committee members Sean O' Riordan, Josephine Sweeney and Cora and Philip Murtagh.
Each year we hold a Family Day, an event which gives everyone a chance to get together, have fun and share experiences. It is also good for the children to get together and realise that they are not alone with Erbs Palsy.