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    Archived pages: 100 . Archive date: 2013-03.

  • Title: 22Q11 Ireland
    Descriptive info: .. 22Q11 Ireland.. Search this site.. Homepage.. About The 22Q11 Deletion.. About Us.. Books that are Specific to 22q11 / VCFS.. Bualadh bos.. A special word of thanks.. Brian Gunnip.. Coolmine Panto Group.. Corner House Carrigaline.. Fantastic Fundraisers *UPDATED*.. Grainne.. Lorraine.. Louise O'Regan at the Cork Mini Marathon.. O'Reilly Family.. Thanks.. Thanks on behalf of Louise O'Regan.. Committee Members.. Contact Us.. Donate.. Events.. Event Details.. VCFSEF 2013-CONFERENCE.. VCFSEF2013 - Booking Info.. VCFSEF2013 - Hotel.. VCFSEF2013 - Programme/Abstracts.. Join Us.. Become a Volunteer.. News.. 22Q@TheZoo.. AHEAD EVENTS.. Barry Kelly @ Cork City Marathon (UPDATED).. Congratulations to Ryan!.. Developing an Information Resource for Health Professionals On 22q Deletion Syndrome (22qDS).. Friends of Rare Disease Day 29 February 2012.. Launch of Information Leaflet.. Louise O'Regan @ The Evening Echo Mini Marathon.. Mary Ellis @ the Great Limerick Run!.. Our Marathon Man.. Research Participants Needed.. Sarah McCarthy @ Yorkshire 3 Peaks Challenge.. Sarah McCarthy scales Three peaks in aid of 22Q11 Ireland.. St Mary's Secondary School Fundraisers.. Terence O'Connor runs marathon for 22Q11 Ireland.. The 6th European Conference on Rare Diseases Orphan Products.. THE IRISH PTP PROJECT: DEVELOPING AN INFORMATION LEAFLET FROM PARENTS TO PROFESSIONALS.. Welcome!.. Online resources.. Facebook Groups.. Newsletters.. Our Stories.. A short piece by Áine - Kids With 22Q.. Anne’s Story.. Sitemap.. Our Details.. Registration No.. 17647.. Registered Address.. Carmichael House,.. North Brunswick Street ,.. Dublin 7.. Facebook.. If you like our site like us.. here.. on facebook too!.. Support Us.. If you would like to donate to 22Q11 Ireland you can do so using our mycharity page.. Click.. to access it.. Welcome to the website of 22q11 Ireland.. Mission.. We provide mutual help and support for individuals and families affected by 22q11.. 2 deletion/DiGeorge Syndrome/V.. C.. F.. S.. Through education, research, outreach and advocacy we seek to raise awareness of this little known condition.. We hope you find  ...   2012, 1:08 PM.. Come on the Mammies! The lovely Louise O'Regan is running the mini marathon in Cork for 22Q11 Ireland and if you'd like to support her you can sponsor.. Aug 8, 2012, 1:05 PM.. This is an innovative project in which the focus is placed on providing information for service providers from the parent’s perspective.. Traditionally information leaflets have been developed by professionals.. Jul 14, 2012, 3:26 AM.. 22Q11 Ireland Have been contacted by Dr.. Linda Campbell and Jane Goodwin of The University of Newcastle, Australia.. They are carrying out an investigation into parents' and caregivers’ experiences regarding.. Jul 14, 2012, 3:22 AM.. Showing posts.. 1 - 5.. of.. 19.. View more ».. Our Events.. Recent Announcements.. Table Quiz 3 May 2012 The Corner House Carrigaline.. If you're interested in taking part the information can be found on our facebook page.. All funds raised are in aid of 22Q11 Ireland and it will be.. May 2, 2012, 1:20 PM.. 2012 Annual Meeting.. The annual meeting for 2012 will be held on 13 October 2012 in the Regency Hotel in Dublin.. Lots more details to Follow!.. Oct 3, 2012, 1:51 PM.. 22q11 Ireland Fundraising Event.. Friday 10 February 2012.. At Rosegreen Community HallBUFFET STYLE DINNER AND TALK BY JOHN LONERGAN (ex govenor of mountjoy prison and author).. RAFFLE AND PERHAPS AUCTION IF ENOUGH SUITABLE.. Jan 23, 2012, 11:44 AM.. Weekend Away Date to be decided.. There also hopes to be a Weekend away to Hidden Valley Rathdrum Wicklow.. Hidden valley is a Holiday Park with lots of Activities for children of all ages the Accomodation.. Oct 12, 2011, 1:42 PM.. 22Q@The Zoo.. Another great day at the zoo is planned for May 2012More details to follow.. Oct 12, 2011, 1:41 PM.. 15.. Sign in.. |.. Recent Site Activity.. Report Abuse.. Print Page.. Remove Access.. Powered By.. Google Sites..

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  • Title: About The 22Q11 Deletion - 22Q11 Ireland
    Descriptive info: There are many sources of information on the 22Q11 Deletion and you will find them under the Useful links section of this site.. Great Ormond Street Hospital have kindly allowed us to use their (October 2007) information sheet and we recommend that you view the following link to get access to their information sheet which explains the deletion  ...   is.. gosh.. nhs.. uk/gosh_families/information_sheets/22q11_deletion_introduction/22q11_deletion_introduction_families.. pdf.. Finally the information sheet is also attached to this page.. Again We at 22Q11 Ireland would like to thank Great Ormond Street Hospital for Children NHS Trust for allowing us to use their (October 2007) Information Sheet.. Č.. Ċ.. ď.. v.. 1.. 22q11_deletion_introduction_families.. (270k).. Ellen Mac Sweeney,.. Sep 4, 2011, 8:54 AM.. Comments..

    Original link path: /about-the-22q11-deletion
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  • Title: About Us - 22Q11 Ireland
    Descriptive info: Our History.. 22q11 Ireland is an organisation set up by parents and professionals to support families of children and adults diagnosed with 22q11.. 2 Deletion Syndrome.. It all started when Anne, Derek and Margaret met at a conference in the UK and realised that there was a need for a similar group in Ireland and so 22q11 was born in 2007.. With the help of Ken Doherty, the patron of our organisation and Rhona O’Connor (formerly Bank of Scotland) the original website was launched.. As anyone involved in 22q11 Ireland will tell you our conferences are one of our biggest events of the year and the first one was no different.. Eighty people were invited to the first conference, we expected forty and were surprised and delighted when one hundred and twenty came.. Membership of the group went from three families to sixty and now stands at approx 90 families.. Where we are now.. Over the last four years the group and its activities have grown and currently we host an annual conference, mini conferences, family fun days and gatherings for parents.. In case you're interested any events you might like to hold are financially supported so let us know if you are thinking of holding one!.. Support and information is also provided for anyone who contacts us..  ...   the research projects to date – we are looking forward to the results leading to a better understanding of 22q and are hopeful for the development of a co-ordinated care pathway leading which will lead to best treatments once a diagnosis has been made.. A special word of thanks.. To Dr.. Robert Shprintzen and Stephan Eliez of the VCFS Education Foundation who visited with us for our 2009 conference and gave us such tremendous insights into issues relating to VCFS/22q.. Dr.. Shprintzen and his dedicated team have been a valuable resource in terms of gaining accurate information and are always happy to share their considerable knowledge with us.. We are extremely excited about hosting the VCFS Education Foundation’s International Conference here in July, 2013 here in Dublin, Ireland.. Our Goals.. Our goal is to help our children live into their ability to live their own lives and we will do this by educating ourselves and.. working together with:.. Families affected by the 22q11.. 2 deletion.. Other rare chromosome disorder groups.. National and international organisations concerned with VCFS / 22q and other rare chromosome disorders.. The medical and scientific community.. Educational institutions.. Government bodies.. We are dedicated to raising awareness of this little known condition and to improving the lives off all those who are affected by 22q / VCFS..

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  • Title: Books that are Specific to 22q11 / VCFS - 22Q11 Ireland
    Descriptive info: Showing.. 7.. items.. Book Title.. Author.. Date of Publication.. Sort.. Educating Children with Velo-Cardio-Facial Syndrome (Genetics and Communication Disorders Series).. Donna Landsman.. 15 April 2007.. Velo-Cardio-Facial Syndrome Volume 2: Treatment of Communication Disorders (Genetic Syndromes and Communication Disorders).. Karen J.. Golding-Kushner Robert J.. Shprintzen.. 1 April 2011.. Velo-Cardio-Facial Syndrome.. Kieran  ...   VCFS (Velo-Cardio-Facial Syndrome).. Raymond Geoffrey Tanner.. 2004.. Missing Genetic Pieces: Strategies for Living with VCFS The Chromosome 22q11 Deletion.. Sherry Baker-Gomez.. 2011.. A Different Life: Growing Up Learning Disabled and Other Adventures.. Quinn Bradlee Jeff Himmelman.. 2 March 2010.. Being Different: Growing up with impairments.. Daniella Krijger.. 2012.. Ascending.. Descending..

    Original link path: /publications-and-reports
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  • Title: Bualadh bos - 22Q11 Ireland
    Descriptive info: Subscribe to posts.. posted.. Jan 29, 2013, 1:53 PM.. [ updated.. Feb 18, 2013, 12:22 AM.. ].. 2012 was an amazing year for Fundraisers and we really appreciate every cent raised.. The following are the list of specific fundraisers that asked us to publicize their fundraising and who have done wonderful work.. If we've missed anyone PLEASE PLEASE PLEASE let us Know!!!.. Barry Kelly.. Caroline and John Ryan (and a whole host of their friends and family).. Caroline Ryan.. Colm Sheridan.. Dean Gammell.. Eamonn Freir and Karina Nugent.. Evelyn Mullally.. Gemma Hardaker.. John Hussey.. Lorraine Khalaf and all of her mini marathoners who do great work every year.. Louise O'Regan.. Michelle and Mark Murphy and all of their supports of the Billy Murphy Memorial Fund.. Sarah McCarthy.. Terence O'Connor.. The O'Reilly Family.. And we already have a load of people to thank for 2013,.. Barbara and Sarah Moran as well as many wonderful volunteers including Fiona, Larry, Anne, Carol and many many more carried out a bag pack in Marks and Spencers in Liffey Valley which raised well over €1,000.. Fiona and Larry as well have not only held two golf classics for 22Q11 Ireland they now plan to brave Carrauntoohil with Anne and many other willing volunteers (By the way if anyone wants to Volunteer just let us know!) - We'll give you more information about that.. Larry Sherin and Elaine Wallace should also be thanked for all their hard work in raising funds through the two golf classics.. If we've forgotten anyone we sincerely apologise and please feel free to update us.. If you are listed but would like to have names added or removed just let us know.. And on Behalf of 22Q11 Ireland our sincere thanks for every cent raised.. Nov 3, 2012, 1:39 PM.. Big Huge Bualadh Bos to Brian Gunnip who ran the Dublin City Marathon in 3:40 in aid of 22Q11 Ireland and raised over €1000 for us.. Congratulations Brian!.. Oct 12, 2012, 8:49 AM.. Louise asked us to pass on this message to all of the wonderful people who took  ...   and do something for her and 22q11 Ireland.. Finally the small matter of money! Collectively we raised 1470 Euro for 22q11 Ireland.. ".. We at 22Q11 Ireland would also like to pass on our thanks too.. If you want to thank anyone who supported a fundraising event that you held or are holidng please just let us know.. Sep 17, 2012, 10:09 AM.. Well done Louise and all the other lovely ladies who ran, walked or even strolled the Cork Mini Marathon in aid of 22Q11 Ireland.. Big round of applause to you all!.. Aug 3, 2012, 10:53 AM.. Big Thanks to the O'Reilly Family in Roscommon who raised €131 for 22Q11 Ireland.. May 4, 2012, 2:44 AM.. The Wonderful folks at The Corner House Pub in Carrigaline have just let us know that they raised over €700 from their Table Quiz Huge Thanks to Stephen and Eric for all their hard work!!!.. Jan 7, 2012, 2:20 PM.. We would like to give a huge round of applause to the Coolmine Panto Group for the wonderful performance of Snow White and The Seven Dwarfs that many people from 22Q11 Ireland saw today.. The Coolmine Panto Group have also kindly supported our group through the raffles that are being held at each of their performances.. Paddy and Gladys Coyle are amongst many who donated their times and energies to produce a very entertaining show.. The full details of the show are available.. and it's a truly wonderful show.. Snow White and Prince Orlando meet the 22Q11 Ireland Gang!.. Sep 13, 2011, 3:18 PM.. Much thanks to Lorraine who got everything and everyone organised for the mini marathon, which I'm sure we'll all agree is no easy task!.. Sep 4, 2011, 9:07 AM.. Apr 27, 2011, 12:27 PM.. Everybody who has ever gotten a letter sent to them or checked out our previous website should thank Grainne who has done a huge amount of work for 22q11 Ireland.. As we launch this new site lets all remember all the wonderful work she has done and continues to do!!!.. 1-10 of 11..

    Original link path: /bualadh-bos
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  • Title: A special word of thanks - 22Q11 Ireland
    Original link path: /bualadh-bos/aspecialwordofthanks
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  • Title: Brian Gunnip - 22Q11 Ireland
    Original link path: /bualadh-bos/briangunnip
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  • Title: Coolmine Panto Group - 22Q11 Ireland
    Original link path: /bualadh-bos/coolminepantogroup
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  • Title: Corner House Carrigaline - 22Q11 Ireland
    Original link path: /bualadh-bos/cornerhousecarrigaline
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  • Title: Fantastic Fundraisers *UPDATED* - 22Q11 Ireland
    Original link path: /bualadh-bos/fantasticfundraisers
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  • Title: Grainne - 22Q11 Ireland
    Original link path: /bualadh-bos/grainne
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    Archived pages: 100