The Rett Syndrome Association of Ireland is an association of parents and families of people affected with Rett Syndrome.
Rett Syndrome is a rare neurodevelopment disorder resulting in learning and physical disability. It affects girls almost exclusively. It often features repetitive and stereotypical hand gestures. Read More about Rett Syndrome or Read about CDKL5 - a closely related condition. We provide support and information to each other and to families who have received a new diagnosis Read about Living with Rett Syndrome We aim to raise awareness among medical and other professionals who work with people affected by Rett Syndrome, as well as public awareness of the condition, and to encourage and assist Research.
We are very pleased to announce our 10th Anniversary Family Weekend on the 27th – 29th Sept in the Sheraton Hotel, Athlone, Co. Westmeath.
We are pleased and delighted that the esteemed Meir Lotan, Physiotherapist & Cochavit Elefant, Music Therapist from Israel will be attending together with Monica Coenraads from the USA who is the Executive Director of the Rett Syndrome Research Trust, http://www.rsrt.org/
Full details of the weekend will be announced in the coming weeks.
We are delighted to announce that the Management & Staff of Bam Contractors , Kill , Co. Kildare are planning to cycle from their Cork Office to their Kill Office to raise funds for our Association.
The event will take place over 2 days – 27th & 28th June and so far over 80 people have volunteerd to take part in some or all of the challenge including our Chairperson Andrew Kehoe.
If you would like to support their efforts , you can donate on line through the mycharity link below. Individual participants have also been issued with sponsorship cards.
Please spread the word about this exciting event and help to raise funds for the Association
Every year Politicians from all parties in the Oireachtas & Seanad take part in a Charity walk to raise funds for a nominated Charity. This year for the first time ever , the event will be cross border and so will include Politicians from the Northern Assembly also.
We are delighted to announce that Rett Syndrome & CDKL5 has been chosen as the nominated charity for 2013.
The event will be hosted by Mountaineering Ireland and will also be attended by Dawson Stelfox , the first Irish man to stand on the summit of Mount Everest and the first Britain to summit Mount Everest via the North Ridge.
If any families would like to attend on the day or even take part in some of the walk ( there are various options from easy to strenuous ) please contact us by email or phone and we can give you further details.
North South Inter Parliamentary Body Event – Mourne Mountains, 30 June
We are delighted to be invited to visit Áras an Uachtaráin on the 17th June 2013, places are limited and advance booking is required, if you would like to attend please email us for full instructions.
The 3rd European Rett Syndrome Conference Maastricht, “Research Update & Preventive Management” (ERSCM 2013). This conference will take place on October 17th – 19th, 2013 at the MECC in Maastricht, The Netherlands.
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Summer 08
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