But what is Friedreich Ataxia exactly? Well, FA is a debilitating, life shortening degenerative neuro-muscular disorder, which affects about 1 in 30,000 people in Australia and New Zealand.

It is most commonly diagnosed between the ages of 5 and 18 years and robs children and young adults of their mobility.

FA leads to loss of muscle co-ordination, fatigue, vision impairment, hearing loss and slurred speech, scolosis (curvature of the spine), diabetes and serious heart conditions.

It is caused by an inherited genetic mutation that limits the production of a protein called frataxin. This protein is needed by the mitochondria, which are the energy producing organelles in our cells. Without it the cells do not function properly resulting in debilitating medical problems, particularly neurological and cardiac.

Although there has been significant progress towards treatments, today there is no cure.

WHO IS FARA?

The Friedreich Ataxia Research Association (fara) is a not for profit organisation that supports research into treatments and a cure for Friedreich Ataxia. fara does not receive State or Commonwealth Government support and relies largely on the family and friends of Friedreich Ataxia patients and generous businesses within Australia and New Zealand to fund its research programs.

Our priorities are to:

  • Identify and fund the most promising research and cutting edge therapies

  • Support the Friedreich Ataxia patient clinics

  • Promote knowledge sharing and collaboration within the scientific community and medical profession

  • Engage with the FA patient community and their families

  • Raise funds through corporate partnerships and community fundraising

  • Raise awareness of FA within the community and scientific and medical professions

Since its establishment in 2003, fara has:

  • Funded nearly $3m in scientific research

  • Created an Australasian FA patient registry to link researchers to individuals with FA

  • Facilitated collaborative work between scientists, doctors and therapists

  • Educated the medical and patient communities regarding FA and research advances

  • Raised awareness of FA and hope for FA patients scientific community and medical profession

  • Engage with the FA patient community and their families

  • Raise funds through corporate partnerships and community fundraising

  • Raise awareness of FA within the community and scientific and medical professions

 

THE BOARD AND STAFF

The Board is made up of four voluntary Directors and the Executive Director. fara Australia is staffed by two part time employees.

Please contact the Chairman, Peter Evans pevans@bellpotter.com.au to discuss issues relating to the board, including appointments.

+Peter Evans - Chairman

Peter is an Equities Adviser at Bell Potter Securities and has over 35 years experience in the financial sector across a broad range of asset classes. Peter has a strong interest in philanthropy and has been on fara’s board since 2013 and was appointed Chairman in 2016.

+Richard Steer - Treasurer

Richard Steer (B.Bus) is a manager at NineSquared, a Brisbane based management consultancy. His expertise includes financial management and analysis, program and portfolio management, policy development and electronic ticketing.

+Jason Coffey - Secretary

Jason Coffey (B.Com, G.Dip.AF) is a Principal at Morgans Financial Limited. He has 17 years experience in wealth management, providing professional investment management and strategic financial planning advice. Prior to joining Morgans Jason was a Director with JBWere. His is currently President of the Friedreich Ataxia Association Victoria.

+Emma Hampton - Director

Emma is a Director of Sydney Educational Tours, providing study tours with English language tuition at leading Australian universities, TAFE colleges and private secondary schools based in Wollongong, Sydney and Canberra. Emma recently completed the New York Marathon, raising over $10,000 for fara.

+Kadi Morrison - Executive Director

Kadi Morrison (BA in Comms, GradCert in Mgmt) has 20 years experience in marketing, and held strategic and tactical positions in the private and public sector. Her experience includes nine years in executive level roles at Qantas leading brand and product expansions from concept through to implementation, including developing brand propositions and business cases and seeking funding approval. Kadi joined FARA in 2016 and is focussed on developing strong corporate partnerships, improving the ease of donating and encouraging community fundraising.