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

 

    DETAILS

 

   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@...

Website: www.ataxia.ie

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: www.ataxia.org.uk

Registered in England No: 4974832 Registered charity No: 1102391

 

 

VENUE

 

The Conference will be held at the Stillorgan Park Hotel, Stillorgan, Co. Dublin (www.stillorganpark.com). 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 (www.aircoach.ie).  Please note that the route is Dublin Airport to Leopardstown.

For Dublin tourism information visit www.visitdublin.com or www.dublin.ie

 

 

How to book

 

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

 

Programme

 

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

_______________________________________

 

PROGRAMME

 

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

 

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

 

Questions

 

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

 

Questions

 

20.00h:  Dinner

 

 

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

 

 



Wed Jun 11, 2008 11:40 am

"Gian Piero Sommaruga \(casa\)" <gippi@...>
gippirintronet
Offline Offline
Send Email Send Email

Attachment(not stored)
Research Conference flyerSept 08 Dublin.doc
Type:
application/msword

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.

The life of Marie Schlau, a German Jewish girl born in 1833 hides great unsolved mysteries: accidents, disappearances, enigmas, unknown diagnoses, disturbing murders, love, tenderness, greed, lies, death ... alternatively a different story unfolds every time and takes us closer to the present. Thus, there are two parallel stories unravelling, each in a different age and place, which surprisingly converge in a revelatory chapter.

Paperback and Kindle versions for "The legacy of Marie Schlau" available for sale at Amazon now!

https://www.amazon.com/Legacy-Marie-Schlau-collective-Friedreichs-ebook/dp/B01N28AFWZ

 

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:

https://www.irbbarcelona.org/en/news/international-patient-advocates-partner-to-fund-spanish-gene-therapy-project-to-treat

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:

https://www.irbbarcelona.org/en/news/new-research-front-to-tackle-friedreichs-ataxia
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.

 

 

Go to top