Health Board: upcoming conferences, talks, campaigns and events

Talking again after four years: Irish life sciences company Genomics Medicine Ireland (GMI) has announced that pioneering genomic research conducted by the company has led to the successful diagnosis and treatment of eight-year-old Mary-Ann Cleary (pictured above with her mother Kathleen) with progressive dystonia, a very rare disease in children. GMI, in conjunction with the UCD Academic Centre on Rare Diseases, worked with experts at Temple Street Children’s Hospital – including consultant paediatric neurologist Prof Mary King and research fellow Dr Eva Forman – to identify a mutation in a gene called KMT2B in the child. This was shown to respond to a treatment called deep brain stimulation. Two months after the treatment Mary-Ann spoke for the first time in four years. Her first word was “mama”. She is now recovering well. Photograph: Conor McCabe
Talking again after four years: Irish life sciences company Genomics Medicine Ireland (GMI) has announced that pioneering genomic research conducted by the company has led to the successful diagnosis and treatment of eight-year-old Mary-Ann Cleary (pictured above with her mother Kathleen) with progressive dystonia, a very rare disease in children. GMI, in conjunction with the UCD Academic Centre on Rare Diseases, worked with experts at Temple Street Children’s Hospital – including consultant paediatric neurologist Prof Mary King and research fellow Dr Eva Forman – to identify a mutation in a gene called KMT2B in the child. This was shown to respond to a treatment called deep brain stimulation. Two months after the treatment Mary-Ann spoke for the first time in four years. Her first word was “mama”. She is now recovering well. Photograph: Conor McCabe

1) Tom Murphy, businessman, entrepreneur and founder of boards.ie will speak about his mental-health journey and the importance of hope at a public meeting at the Clayton Hotel, Steamboat Quay, Limerick city on Thursday, April 5th, at 8pm. Admission free and donations to the mental health support organizsation, Grow. Advance booking on 086 823 1624.

2) #UniteforParkinsons is a worldwide campaign on social media on April 11th, during Parkinson's Awareness Week. The campaign aims to highlight, through videos and posts, what it's like to live with this progressive neurological condition. On Sunday, April 15th, at noon, people with Parkinson's disease, their families, friends and carers will take part in a "Unity Walk" around Merrion Square in Dublin. All are welcome to join. For more details, contact Mary Butler on parkinsonsevents@gmail.com.

3) Country music singer, Alzheimer's activist and daughter of the late Glen Campbell, Debby Campbell, is the headline act at a concert on April 16th at the Helix Theatre, Dublin City University, Glasnevin. Organised by Sonas apc and supported by the Dementia: Understand Together campaign, the Moments of Joy concert will feature Vintage Youth, Dance Theatre of Ireland's seniors dance ensemble, and the Forget-Me-Nots choir, a Dublin-based community choir that welcomes people with dementia, their families, carers and friends. The free concert aims to highlight the therapeutic benefits of music and dance for people with dementia. Advanced booking on understandtogether.ie/momentsofjoy. See sonasapc.ie for more details about the 10th international conference on dementia at the Helix on April 16th and 17th.

4) The annual school gardens conference at the Organic Centre, Co Leitrim, will be held on Saturday, May 19th, from 10am-4pm. Postponed due to the snow earlier this year, the conference will feature interactive workshops for teachers (and parents) to help them establish and maintain an organic school garden. Biodiversity, composting, growing herbs and cooking in schools are among the other topics. Cost €50. Email hans@theorganiccentre.ie or call 071 985 4338.

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sthompson@irishtimes.com

Sylvia Thompson

Sylvia Thompson

Sylvia Thompson, a contributor to The Irish Times, writes about health, heritage and the environment