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 over $2m 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

Our mission is to treat and cure Friedreich Ataxia.

MEET THE FARA BOARD

Varlli Scott

President

Varlli Scott (B.Bus Mktg) was the Executive Director of fara from 2005 – 2016 before taking on the role of President. During this time she has worked in developing Friedreich Ataxia research programs in Australia, collaborated with international research groups and built strong partnerships with international funding partners. At a local level Varlli has helped develop grassroots fundraising programs, which have significantly contributed to fara’s capacity to fund local research. Prior to this Varlli worked in marketing account roles.

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, programme 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.

Natalie Allamby

Director

Natalie (B.Bus Hon) is a senior HR manager with over 19 years experience. She has experience across a range of sectors including financial services, property, IT, retail and manufacturing. Natalie is Head of HR at Melbourne wealth management firm Escala Partners.

Laurel Hosking

Director

Laurel is an experienced event manager and fundraising professional. She was the founder of FA in SA, a support service for families living with Friedreich ataxia. Laurel has been pivotal in providing these services for the first time to people living in South Australia.

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.

Dianne Boon

Director

Dianne Boon (PGD Health Science) is a palliative nurse from Palmerston North, New Zealand. For the past 15 years Dianne has worked in a variety of senior nursing roles at Arohanui Hospice. Two years ago she was instrumental in setting up FARA NZ and wants to ensure that New Zealanders living with FA have access to expert support and advice.

Professor Bronya Keats

Chief Research Officer

Professor Bronya Keats has been involved in Friedreich ataxia research since 1983 when she moved to the Department of Genetics at the Louisiana State University Health Sciences Center in New Orleans. From 1999 – 2008 she was the Head of this Department.

Professor Keats was one of the founding members of the United States Friedreich’s Ataxia Research Alliance Board of Directors and she has been the Chief Research Officer for this organization and for fara since 2009.

Kadi Morrison

Executive Director

Kadi Morrison (BA in Comms, GradCert in Mgmt) has 25 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. More recently Kadi has provided marketing advice to some of Australia’s leading brands.

Kadi joined fara in 2016 and is focussed on developing strong corporate partnerships, improving the ease of donating and encouraging community fundraising.

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