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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Mic Christopher Anniversary

Last night was the tenth anniversary gig for Mic Christopher, a musician I adore but never had the pleasure to meet or here live. His former band The Mary Janes, along with The Frames led a musical tribute in his honour in Vicar Street. Mic passed away tragically in Holland while on tour with the Waterboys, one of his favourite bands. He left behind some great music, including his solo album ‘skylarkin’, which was completed by his friends and released nine years ago on his first anniversary. Its one of the most beautiful Irish albums ever made.

A review of the four and a half hour gig (in aid of the Irish fragile x society ) wouldn’t do it any justice, so to sum it up, it was magical! Musicians and friends celebrating the life of their friend and hero, someone they respected and admired, and who will be fondly remembered. It was great to learn a lot more about Mic’s life and personality through the stories from his friends and his dad. It was an emotional night, which everybody involved should be so proud of. Mic would have been very proud too.

Set List:

Party Game (The Mary Janes) – Glen and MJs
Sham (The Mary Janes) – Eoin Glackin and MJs
Bored of Their Laughing (The Mary Janes) – Philip Marshall and MJs
Cut Me Loose (The Mary Janes) – Matthew Devereux and MJs
Listen Girl (Mic Christopher) – Matthew Devereux and Glen
I’ve Got Your Back (Mic Christopher) – The Frames and Conall Coleman
Traditional Jigs – Colm Mac Con Iomaire + 2 Others [Concertina and Uillean Pipes]
Pete Courtney and MJs
Eoin Dillon
Everything is Going to be Alright (poem) + John The Baptist (John Martyn) – Scullion with Colm and Dave
Eyelids Into Snow (Sonny Condell) – Scullion with Colm and Dave
I Need You (The Beatles) – Mark Geary and The Frames
This is the Sea (The Waterboys) – Mike Scott and The Frames
Fisherman’s Blues (The Waterboys) – Mike Scott and The Frames
Peter Murphy
Ken O’Neill (Hey Day Festival contest winner)
[Don’t know First name] Roche and her Son
Kids Song (Mic Christopher) – Interference, Mundy, The Frames, Levi + Isaac O’Sullivan and Annie Smith Short
Breaking Out (Interference) – Interference, Mundy and The Frames
Gold (Interference) – Interference and The Frames
Centurian (The Mary Janes) – Claire Nicolson
What a Curious Notion (Mic Christopher) – Nina Hynes
Who Knows Where Time Goes – Miriam Ingram
Hard Station (Paul Brady) – Paul Brady
Arthur McBride (Traditional) – Paul Brady
Poem – ‘He’s a true one fardadadididdle, He’s A True one and I tell you…’
Winesong (The Mary Janes) – Mundy and MJs
Lyin’ Down – Mundy and MJs
Part of Me (The Mary Janes) – Tony Fitz and MJs
Bones (The Mary Janes) – Aimee Christopher, Glen and MJs
The Story of an Artist (Daniel Johnston) – Jerry Fish
True Friends (Jerry Fish & The Mudbug Club) – Jerry Fish
And The Healing Has Begun (Van Morrison) – Acko, Swanny and The Frames
The One I Love (REM) – Canice Kenealy and The Frames
Friends (The Mary Janes) – Paddy Casey, The Frames and MJs
Heyday (Mic Christopher) – The Coronas and everyone else
Skylarkin’ (Mic Christopher) – The Frames and Matthew Devereux
You Ain’t Goin’ Nowhere (Bob Dylan) – The Frames, Matt Devereux, Noreen O’Donnell, Acko, Levi + Isaac O’Sullivan and Annie Smith Short, Someone From Crowd
Forever Young (Bob Dylan) – Liam O Maonlai and everyone else
Wooden Heart (Elvis Presley) – Harry Christopher and The Frames
Suspicious Minds (Elvis Presley) – Harry Christopher and The Frames

As I watched the gig,
this
kept coming into my head. I’ve read it so many times but its still so beautiful.