Author Archives: Caroline

  • HDACi clinical trial starts in Turin

    Posted on 9th April 2012 by Caroline in Uncategorized.

    Repligen Corp. (NASDAQ:RGEN) in Waltham has enrolled (March 2012) its first patient in a Phase 1 clinical trial of RG2833 in adult patients with Friedreich’s ataxia (FA), see http://www.masshightech.com/stories/2012/03/12/daily57-Repligen-begins-clinical-trial-of-drug-for-Friedreichs-ataxia.html Repligen also reported it’s year-end financial results for 2011, according to two announcements this week. The RG2833 drug candidate is an oral class 1 histone deacetylase […]

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  • HSE services report

    Posted on 15th February 2012 by Caroline in Hydrotherapy, Occupational Therapy, Physiotherapy.

    All Friedreich’s ataxia patients hope that they will not be forgotten in the these recessionary times. The HSE for their part recently compiled a report to develop a strategy and policy for those requiring neuro-rehabilitation services. You will have seen during winter, FARA Ireland asked parents of children who were under 18years about the physical […]

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  • The latest on HDACi

    Posted on 10th January 2012 by Caroline in Clinical Trials.

    Over the last month information has been coming through about Phase 1 clinical trails in HDAC inhibitors for Friedreich’s Ataxia. In this Italian newspaper, it talks about the imminent start of a six months duration trial, only for adults, they do not say which drug, but as they say that “awakens the dormant gene”, I […]

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  • FA Conference Strasbourg May 2011

    Posted on 2nd January 2012 by Caroline in Events.

    One of our founding members Dr Mary Kearney recently travelled to Strasbourg to attend the FARA Scientific Symposium on Friedreich’s Ataxia. She gives us an outline of the conference below. Strasbourg Thursday – May 5th 2011 I went to this conference on the understanding that it was a scientific conference. I did not expect a […]

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  • HSE meeting on the Progressing Disability Services

    Posted on 31st December 2011 by Caroline in Physiotherapy.

    Health Services Executive (HSE) Review of services for those with Progressive Disability 0-18 years. Monday 12 December 2011 Naas Meetings were organised by the HSE in the Kildare and West Wicklow area for parents with children with progressing disabilities. Over the last few years it had become apparent that disability services delivered by the HSE […]

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  • Results of the Friedreich’s Ataxia Physical Therapy Survey

    Posted on 31st December 2011 by Caroline in Hydrotherapy, Occupational Therapy, Physiotherapy.

    FARA Ireland is delighted with the level of interest shown by parents in the recent survey on the needs of children. Parents of 11 Friedreich’s Ataxia (FA) sufferers completed the survey, with the children ranging in age from 13-22 years, with a mean age of 15.5 years. Their conditions ranged from being well (minimal symptoms) […]

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  • Physical Therapy Survey

    Posted on 15th November 2011 by Caroline in Hydrotherapy, Occupational Therapy, Physiotherapy.

    Over the past months a number of parents have approached us with a view to finding out about services that should be available to families who have children with Freidreich’s Ataxia. Some children receive regular Physiotherapy and Hydrotherapy, some get nothing at all. With a view to finding out what families are receiving we have […]

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  • Christmas Cards 2011

    Posted on 14th November 2011 by Caroline in Christmas Cards, For Sale.

    With only a couple of packs remaining, our Christmas cards have been selling so fast that we have placed a second order with our printer. These new packs should be available around the 25th November. We are delighted with the response this year. Thank you for your support!

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  • Christmas Cards 2011

    Posted on 12th October 2011 by Caroline in Christmas Cards, For Sale.

    We are so excited about our fabulous new cards for Christmas 2011. We will be updating our shop over the coming days with pictures and details of prices. All proceeds will go towards finding treatments and a cure for Friedreich’s Ataxia. If you can, please help us to find a cure!  

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  • FA Mums’ Lunch – A Great Success!

    Posted on 18th June 2011 by Caroline in Events, Mums' Lunch.

    Today FA Mums from Cork, Limerick, Kilkenny, Wexford, Down, Wicklow and Dublin attended an informal lunch at the D4 Berkeley Hotel in Dublin. We had the opportunity to chat, to get to know each other and to share our ideas about and experience of FA. It was great!  Between us we have a wealth of […]

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