euro-ATAXIA Conference


Thursday 25th September 2008 – the Stillorgan Park Hotel, Dublin


     Who should attend?


  • Individuals involved in research into the progressive ataxias
  • Healthcare professionals with an interest in the ataxias
  • Representatives of research organisations with an interest in ataxia
  • Students in the field are also welcome to attend




Research conference: ‘Current Research into the Ataxias’




Dear Colleague,

       We are pleased to invite you to a Research Conference dedicated solely to the ataxias, which is being jointly organised by Ataxia UK and the   Friedreich’s Ataxia Society of Ireland (FASI) on the 25th September, 2008. This date is also International Ataxia Awareness Day, an ideal opportunity to highlight the vital research happening all over the world.

The event will bring together researchers from across Europe, the USA and Australia, as well as more locally from the UK and Ireland. There will be sessions specifically for cerebellar ataxia and Friedreich’s ataxia and presentations highlighting recent key developments in ataxia research.

We do hope you can join us in Dublin.

Best wishes



          Barbara Flynn                                             Sue Millman

         Chief Executive, FASI                                 Chief Executive, Ataxia UK




   The Conference will begin at 9.00h with registration and the programme of events will commence at 9.30h. A small conference fee of €50 will be charged. Places are limited, so please book early. Lunch and refreshments throughout the day will be included. Accommodation, at a reduced cost, may be booked through Ataxia UK or FASI.


FASI are also hosting this year’s euro-ATAXIA conference and AGM at the same venue on the 26th-27th September and you are welcome to stay on if this is of interest to you. Please see enclosed programme.


FASI San Martino, Mart Lane, Dublin 18

Tel:                +353 1 289 4788         Fax :+353 1 289 8845

E-mail: ataxia@...


Charity No: 7076


Ataxia UK: Winchester House, Kennington Park, Cranmer Road, London SW9 6EJ 

Tel:                +44(0)20 7582 1444          Fax: +44(0)20 7582 9444 

Email: research@...     Website:

Registered in England No: 4974832 Registered charity No: 1102391





The Conference will be held at the Stillorgan Park Hotel, Stillorgan, Co. Dublin ( Accommodation and meals will also be provided at the Hotel at a subsidised rate.

The venue is on the periphery of Dublin city centre and there is an “Air coach” every 15 minutes from the Airport which will bring you directly to the hotel (  Please note that the route is Dublin Airport to Leopardstown.

For Dublin tourism information visit or



How to book


Please complete enclosed booking form (*) and return by the 31st July.




09.30h:   Welcome - Professor Barry Hunt (Ataxia UK) and Dr Raymond Murphy (FASI)


09.45 - 12.30h:     Friedreich’s Ataxia Research


Chair: Professor Massimo Pandolfo


Professor Richard Festenstein (Imperial College London, UK): 

Restoring frataxin gene expression in Friedreich's ataxia - epigenetics meets transcription


Dr Joel Gottesfeld (Scripps Research Institute, US)

Drugs that target frataxin gene silencing


Dr Piyush Vyas (Indiana University, US)

TAT conjugated frataxin as novel non-viral therapy for Friedreich's ataxia


11.00 – 11.30h:  Coffee break


Professor Dolores Cahill (University College Dublin, Ireland)

Proteomic Studies on Friedreich’s Ataxia


Professor Massimo Pandolfo (Hôpital Erasme-Université Libre de Bruxelles, Belgium)

Idebenone trial update


Dr Arnold Munnich (Hôpital Necker-Enfants-Malades and Université Paris V René Descartes, France) 

Deferiprone trial update


Professor Martin Delatycki (Murdoch Childrens’ Research Institute, Melbourne, Australia)

Clinical outcome measures in Friedreich’s Ataxia


Discussion on results from latest trials – facilitated by Professor Pandolfo


13.30 - 14.30h:  Lunch


14.30 - 17.15h:   Research into the Cerebellar Ataxias


Chair: Professor Koenig (Université Louis Pasteur de Strasbourg, France)


Dr Thomas Klockgether (University of Bonn, Germany)

Update on EuroSCA clinical projects


Dr Matthew Wood (University of Oxford, UK)

RNAi as potential therapy for dominant ataxias – focus on SCA7


15.45 – 16.15h:  Tea break


Dr Sylvia Krobitsch (Max-Planck Institute for Molecular Genetics, Germany) Spinocerebellar ataxia type 2: Functional characterization of ataxin-2 by inhibitory molecules


Dr Alastair Wilkins (University of Bristol, UK)

Bone marrow-derived stem cells and their potential role in degenerative ataxias.


General discussion




euro-ATAXIA Conference

Friday 26th September 2008

At the Stillorgan Park Hotel, Dublin, Ireland





Friday 26th September 2008


9.30 – 12.30h


Welcome: Tom Kelleher, Chairperson – Friedreich’s Ataxia Society Ireland


Research updates


Chair: Professor Michel Koenig


Professor Massimo Pandolfo (Hôpital Erasme-Université Libre de Bruxelles, Belgium)

Update on clinical trials in FA


Dr Joel Gottesfeld (Scripps Research Institute, US)

Update on therapies for overcoming frataxin gene silencing


Professor Andrew Greene (Consultant Geneticist, National Centre for Medical Genetics, Dublin)

Practical Genetics of Ataxias




11.00 - 11.30h:  Coffee break


Dr Thomas Klockgether (University of Bonn, Germany)

Overview of EuroSCA project


Professor Michel Koenig (Université Louis Pasteur de Strasbourg, France)

Update of the recessive ataxias




12.30 - 13.30h:    Lunch


13.30 - 16.30h:  Living with Ataxia


Chair: To be confirmed





Professor Martin Delatycki (Clinical Geneticist, Melbourne, Australia)

The Melbourne Friedreich’s Ataxia Programme


Dr Julie Greenfield, (Research Projects Manager, Ataxia UK)

Ataxia UK Accredited Ataxia Centres


Dr Raymond Murphy (Neurologist, The Adelaide & Meath Hospital, Dublin) - Specialist Ataxia Clinic: an example from Ireland


14.45 – 15.15h:  Tea break


Margot Barnes (Occupational Therapist)

Long-term Housing for People with Ataxia


Fiona Hill (Senior Speech & Language Therapist, the Adelaide & Meath Hospital, Dublin)

The Benefits of Speech Therapy


Elisabeth Cassidy (Physiotherapist, Brunel University London) Contemporary physiotherapy practice in the UK

Results of a survey




20.00h:  Dinner



(*) not attached in the original mail from Mary Kearney



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The legacy of Marie Schlau: literature to help cure Friedreich's Ataxia

If you feel like reading an unputdownable novel while collaborating with a just and solidary cause, "The Legacy of Marie Schlau" is your book! 100% of all funds raised will be dedicated to medical research to find a cure for Friedreich's Ataxia, a neurodegenerative disease that affects mostly young people, shortening their life expectancy and confining them to a wheelchair.

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Research projects currently being financed by BabelFAmily

Currently, BabelFAmily is financing two promising research projects aimed at finding a cure for Friedreich's Ataxia. Whenever you make a donation to us or purchase a copy of "The legacy of Marie Schlau", this is where all funds raised will be devoted to:

1) Gene Therapy for Friedreich's Ataxia research project:

The project is the result of an initiative of Spanish people affected by this rare disease who are grouped in GENEFA in collaboration with the Spanish Federation of Ataxias and the BabelFAmily. The Friedreich’s Ataxia Research Alliance (FARA), one of the main patients’ associations in the United States now joins the endeavour.

2) Frataxin delivery research project:
The associations of patients and families Babel Family and the Asociación Granadina de la Ataxia de Friedreich (ASOGAF) channel 80,000 euros of their donations (50% from each organisation) into a new 18-month project at the Institute for Research in Biomedicine (IRB Barcelona). The project specifically aims to complete a step necessary in order to move towards a future frataxin replacement therapy for the brain, where the reduction of this protein causes the most damage in patients with Friedreich’s Ataxia.

The study is headed by Ernest Giralt, head of the Peptides and Proteins Lab, who has many years of experience and is a recognised expert in peptide chemistry and new systems of through which to delivery drugs to the brain, such as peptide shuttles—molecules that have the capacity to carry the drug across the barrier that surrounds and protects the brain. Since the lab started its relation with these patients’ associations in 2013*, it has been developing another two projects into Friedrich’s Ataxia.



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