Friedreich Ataxia Research Association


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	Download the latest newsletter in PDF format: August 2004 February 2005 December 2005 April 2008 PANOS IOANNOU Associate Professor Panos Ioannou passed away earlier this year. He was a great loss to those who knew him as a person and to those of us who were fortunate to see his research into Friedreich Ataxia at first hand. Panos was the head of the Cell and Gene Therapy unit at the Murdoch Children’s Research Institute where he headed a team that is a world leader in FA research. A brilliant academic, Panos had research interests in a variety of fields but it was his recent work in Friedreich Ataxia that attracted significant funding from funding sources in a number of countries. Panos left us with a legacy that he believed would solve the Friedreich problem. His development of the assay that enabled the screening of drugs for frataxin potential was unique in the FA field. Despite the severity of his illness Panos continued his research to the very end of his life and found the strength to write a final letter to his colleagues and friends only days before his death. Panos’s colleagues and co-researchers in the ataxia field are continuing his work. The eventual outcome of their research will reflect greatly upon the person who, through his wisdom, fine intellect and passion for the task in hand, ensured that a breakthrough would occur.



	FROM THE PRESIDENT March 2008 Friedreich Ataxia sufferers and families may have wondered why our information to them has not been updated in the past year. However, we are aware that you grow frustrated at hearing about what is happening in laboratories when what you want to know is when all this research is going to be relevant to my condition and when can I expect to hear about drug trials with humans. Frustration is a natural consequence of having to wait upon drug development because time taken seems to be endless. We just have to understand that novel drugs have to be trialled initially upon healthy volunteers and animals subsequent to them being found to have validity through laboratory trials with mice. This process can take several years and then has to pass through a bureaucracy that ensures the safety of individual sufferers who participate in the eventual trials. Well, the time has arrived when we can claim that the research that has been laboriously undertaken over the past decade is at last beginning to translate into practice. You will see from the newsletter that the time has arrived when we can claim that that the research that has been undertaken laboriously over the past decade is at last beginning to translate into practice. The Friedreich Ataxia Research Association (Australasia), has been diligently pursuing funding and applying this to relevant research in Australia and New Zealand. Each year in November the association, through its Scientific Advisory Committee, commits significant funding to research groups that are heavily involved in work with antioxidants, iron chelators, stem cell research and gene therapy. While we have met with disappointments in some areas, particularly where human trials have been delayed or abandoned, the research that is occurring here and throughout the world gives us cause for great optimism. We can say with confidence that the therapeutic period for the treatment of Friedreich Ataxia is now with us. A mere twenty years back the number of researchers into FA could be counted on one hand. The giant leap forward in the numbers now involved is a reflection of the interest that the disorder has become and the significance it could well have for other degenerative diseases. We have attempted in this edition to present the most up-to-date research worldwide. Readers will note the variety of this work including that being undertaken in Australia. The latter is in no small measure due to the wonderful response from our many donors who are listed here. The executive of our organization has worked diligently over the past several years since the establishment of our Australasian concept to ensure that our sufferers have reason for optimism about the future. The principal driving force has been our Executive Director, Varlli Beetham, who has worked tirelessly and successfully to raise the funds which have made our local research possible. We are also fortunate that in the Friedreich Ataxia Clinic in Melbourne we have probably the most sophisticated support system in the world. We continue to rely on the support of all families if we are to maintain our present momentum. Through your contacts we would hope that our fundraising continues to prosper and that the relevant therapies now being investigated become a reality through appropriately funded human drug trials. Peter Rousch AM Emeritus Professor President