Paddle for Friedreich Ataxia


Monday, 30 September 2013

Join us for a 23km fun race to raise money for this incurable, debilitating disease.

The race will take place on Saturday October 19, 2013, (Cobram/Barooga)

Starting at Marker 1938 at 1.00pm

(From Barooga take the Mulwala – Barooga Road to Seppelts road then follow Stock Route Road for 6.4kms. Spatial Vision’s VICMAP BOOK Ref K6)

Finishing at Thompson’s Beach Cobram. Entry/donation - $30.00, payable at the start

Stay on for a night of entertainment at the Beach Café, Thompson’s Beach Local musicians and great finger food included - $20.00 payable on the night – from 6.30pm. Drinks purchased at the bar.

Money raised will support FARA (Friedreich Ataxia Research Association of Australasia) in their continued mission to support Australia's world leading research for treatment and a cure.

For further information please contact Varlli Beetham: varlli@fara.org.au or 03 8615 4808

 

What is FARA and Friedreich Ataxia?

FARA (Australasia)

FARA(A) is a not for profit organization dedicated to the pursuit of scientific research leading to treatments and a cure for Friedreich Ataxia (FA). FARA(A)’s mission is to slow, stop, and reverse the damage caused by this rare disease. FARA(A)’s organizational structure includes a board of 6 parents of 10 FA patients from Australia and New Zealand, and a Scientific Advisory Committee of experts in FA and related fields.

Friedreich Ataxia (or FA)

FA is a fatal, genetic, neurological, degenerative disease, believed to affect around 1 in 40,000 people. Currently there is no cure. FA initially causes inco-ordination, slurred speech and difficulty walking, usually striking during the childhood and adolescent years. As it progresses, FA causes complete incapacitation, vision, hearing and speech failure, combined with severe heart disease, scoliosis and diabetes. In later stages, patients usually suffer from cardiac failure in their late thirties. Intellect remains unimpaired. As FA causes a greatly reduced life expectancy, it is a race against time for all FA sufferers and their families.

FARA(A) funded FA research

FARA(A) supports world leading FA researchers in Melbourne at the Royal Childrens Hospital at the Murdoch Childrens Research Institute (MCRI), the University of Melbourne, Monash Medical Centre Friedreich Ataxia Clinic, University of Queensland, Queensland Institute Medical Research (QIMR) and also at the University of Sydney. Ten years since discovering the FA gene, dramatic research breakthroughs are beginning to occur both locally and internationally, offering very real hope of treatments and potential cures for sufferers. Scientists are now beginning to say it is a matter of ‘when’ and not ‘if’ a cure is found. It is an exciting time for FA research.

Major developments

Perhaps the most exciting recent breakthrough has been the development of a dedicated Friedreich Ataxia stem cell laboratory at the Centre for Neuroscience, University of Melbourne. This is the first of its kind in the world. Under Doctors Mirella Dottori and Alice Pebay, FARA(A) is funding world leading research into the development of iPS cellular models of FA to correct the inherited mutations found in the frataxin gene locus of FA patients. These studies have the long term aim of differentiating to specific cell types affected in FA, such as nerve, brain and heart cells, to be used for cell transplantation to restore function in patients.

Research funding philosophy

It is FARA’s prime objective to aggressively fund both laboratory research and clinical trial development in Australia, with the specific intention of accelerating Australian patients into clinical trials for the first potential therapy for FA. This provides overwhelmingly the greatest source of hope for sufferers and their families.

As FA sufferers are diagnosed in their childhood and teenage years, they are most often wheelchair bound by 21. They must not only live with this disability and the enormous difficulties and disadvantages associated with it, but worse is the acceptance that greater deterioration will continue to occur, preventing employment, education and socialization opportunities taken for granted by others their age. Intellect remains unimpaired, but they are no longer able to speak or express their opinions without extreme difficulty. With a greatly reduced life expectancy, FARA’s role in funding and stimulating research for treatments and a cure is crucial.

FARA(A) achievements

As a result of FARA and YAFFA funding, the world’s first FA patient care clinic at the Monash Medical Centre has been developed. The clinic provides specialist care, free of charge, once a month for FA sufferers. Specialists include Neurologists, Occupational Therapists, Physiotherapists, Ophthalmologists, Speech Pathologists and Counselors. Besides promoting the best possible quality of life, the clinic is vital in establishing a database of patient records, thus creating potential for drug trials to use Melbourne as their patient base.

FARA(A) funding sources

FARA(A) is the solitary FA research funding group in Australia. FARA(A) is made up of 6 parents of 10 FA children. FARA(A) does not receive any State or Federal Government funding. All funding is generated from FARA(A) fundraising activities, grants, corporate sponsorships and donations.

FARA(A) Scientific Advisory Committee

FARA(A) has created a Scientific Advisory Committee (SAC) that advises annually on all funding applications with the prime objective of maximizing research potential that will lead to treatments and cures. The SAC was implemented to ensure all funding allocations are not subject to bias or influence and are the result of expert opinion and long term planning. Every dollar will deliver its best possible outcome. It is also intended to provide expert direction on future funding allocations. 

Contact

FARA(A) has DGR status. All donations are tax deductible. For further information, please contact Varlli Beetham, Executive Director, FARA(A) on 03 8615 4808 or varlli@fara.org.au or go to www.fara.org.au