The Irish Fragile X Society

Fragile X Conference Trinity

 

Last November You might remember I wrote about the Mic Christopher anniversary gig I attended in Vicar Street. The gig was a celebration and memory of Mic’s music, but it also raised awareness and money for the Irish Fragile X Society,

www.fragilexireland.org

A couple of days ago, Sheila (wife of Colm Mac Con Iomaire, violin player from The Frames) whose son Darach has Fragile X posted this update to The Frames message board. I contacted her by email and she kindly let me post it here too. When we attend a charity event, its always nice to hear where the money goes, and it sounds like this money was really appreciated.

Dear friends of the Irish Fragile X Society,

Last November The Frames, The Mary Janes and their friends came together to honour the memory of Mic Christopher and mark the anniversary of his passing. The funds raised from the Vicar St gig were very generously donated to the Fragile X Society with a view to inviting Fragile X experts from the USA to deliver a series of lectures to offer strategies that have not been available in Ireland to date. Currently there is not one professional in Ireland with Fragile X expertise.

The not for profit Developmental FX Clinic in Denver, Colorado was founded 25 years ago by two internationally renowned Speech and Occupational therapists; Tracy Murnan Stackhouse and Sarah “Mouse” Sharfeneker. Tracy and Mouse have dedicated their professional lives to helping individuals and families living with Fragile X around the world. Their knowledge is second to none and they have been fortunate enough to assist individuals with Fragile X in making many life transitions.

On Saturday September 22nd the IFXS hosted a one day conference in Trinity College Dublin, Tracy and Mouse delivered several lectures to a large gathering of Speech, Occupational and Behavioural Therapists, Teachers, SNAs and family members.

On Monday September 24th they had a very successful school visit at St Senans Primary School, Enniscorthy, Co. Wexford which is currently attended by four boys with Fragile X Syndrome, followed by lectures to over 65 staff from St Senans and neighbouring schools.

On Tuesday September 25th they delivered another conference at Little Stars Therapy Clinic, Enniscorthy, Co. Wexford which was well attended by local parents, therapists and HSE staff.

These three inspiring days of knowledge and strategies for home and school were made possible due to the generosity and support of The Frames, The Mary Janes, Claire Leadbitter, the Christopher family, the Vicar st staff, Shannon and Jen at Order In The Sound, and all the fans who purchased tickets for that memorable night.

The Irish Fragile X Society would like to extend our warm and heartfelt thanks for very kindly giving us this wonderful opportunity to build a better future for our children. These conferences have been life changing for many, especially those of us who have children needing long term support. We are inspired as a result of this last week and have fresh hope that our children will one day be in a position to lead fulfilling independent lives with the right support and interventions.

With kind regards and sincere gratitude,

Sheila, Maria and all at the The Irish Fragile X Society

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5 thoughts on “The Irish Fragile X Society

  1. Nice to see the money was put to a good use. Sadly, there are so, so many good causes and we can never give to them all. Good to get positive feedback like that though.

  2. It posted loud & clear, Jen!
    As you might recall from reading “Long Time, No See” our son Gus has a chromosomal defect called “Trisomy 12 p” – it affects the “x” on his 12th pair of chromosomes. More biology than you probably wanted here!

    All to say that I know what Fragile X is. Also know how lonely it cam feel to have a child with a rare syndrome and how frustrating it can be when looking for help. Cheers to The Frames, The Mary Janes, Claire Leadbitter, the Christopher family, the Vicar st staff, Shannon and Jen at Order In The Sound, and all the fans like YOU, Jen, who purchased tickets and brought this wonderful help to the kids and their families.

    • Beth I can only try and imagine how lonely and frustrating that can be. I enjoyed reading about Gus and how yourself and Mike dealt with his special needs in such a loving and positive way, just like you would do with any child. I hope Gus is doing well.

  3. Hi, I read on twitter today that today is Fragile X awareness day. I hadn’t heard much about this condition until recently when you explained it to me Jennifer. It is great that a gig like that could raise much needed funds.

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