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

9.30h: Conference opened by Mary Harney, Minister for Health & Children

09.40h: Welcome - Professor Barry Hunt (Ataxia UK) and Dr Raymond Murphy (FASI)

09.50 - 13.30h: Friedreich’s Ataxia Research

Chair: Professor Massimo Pandolfo

Professor Richard Festenstein (ImperialCollegeLondon, UK):

Restoringfrataxin gene expressionin 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 (UniversityCollegeDublin, Ireland)

Proteomic Studies on Friedreich’s Ataxia

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

Update on idebenone and other trials

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 - 14.15h: Lunch

14.15 - 17.15h: Research into the Cerebellar Ataxias

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

Professor Olaf Riess (University of Tΰbingen, Germany)

Update on EuroSCA scientific projects

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 treating degenerative ataxias.

General discussion

euro-ATAXIAConference

Friday 26thSeptember 2008

At the Stillorgan Park Hotel, Dublin, Ireland

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PROGRAMME

Friday 26th September 2008

9.30 – 12.30h

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

Researchupdates

Chair: Professor Michel Koenig

Professor Massimo Pandolfo (Hôpital Erasme-UniversitéLibre 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

Questions

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

Dr. Pierre Vankan (Santhera Pharmaceuticals, Switzerland)

Friedreichs Ataxia prevelance in Europe: ice age origin of the observed distribution

Questions

13.30-14.15h: Lunch

14.15 - 16.30h: Living with Ataxia

Chair: Mrs Sue Millman, Chief Executive, Ataxia UK

…/..

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 & MeathHospital, Dublin)

The Benefits of Speech Therapy

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

Results of a survey

Questions

20.00h: Dinner