About our charity. 

A1OA is a proactive charity dedicated to supporting Australians and their families affected by Alpha-1 Antitrypsin Deficiency (A1AD).

We were registered as a charity on 4 June 2020. Our inaugural governance committee identified the need to have a charity for A1AD that is accountable to its members and advocates for treatment and a cure for A1AD. The current Board membership includes people with Alpha-1 and health professionals.

We intend to be the primary point-of-call for all A1AD patients (alphas), their families, carers, health professionals, government and other interested parties, and to foster collaborations and partnerships to expedite our charity objectives.

We work to promote the prevention and control of A1AD through:

  • Public awareness raising
  • Health professional education
  • Identifying and supporting those affected
  • Advocating for treatment

Our Strategic Goals

Our vision is to cure Alpha-1 Antitrypsin Deficiency. This strategic plan outlines 4 goals to help us achieve that.

Download the full strategic plan

Support 

Educate

Advocate

Awareness

The Board.

Gaynor Heading
President

Gaynor has a Ph.D. in Medicine and was an Associate Professor with the University of Sydney. Her commitment to public health is demonstrated by her career in health. She is an experienced senior executive and was Deputy Chief Executive Officer of the Health Education and Training Institute, NSW Health. She has publications in several areas including respiratory health and health professional education and has held competitive research grants including an NH&MRC grant. Her extensive consumer experience was gained through roles including community liaison manager and public health researcher. Gaynor has many years of volunteering experience and fundraising for registered health causes.

SANDRA BAXENDELL
DIRECTOR RESEARCH AND GRANTS

Sandra graduated from the University of Queensland with a Veterinary Science degree and was dux of her year, received a University Medal, then undertook doctoral studies and was awarded a PhD from the same university. She has held positions in government, agribusiness and university sectors, where she gained additional qualifications in management, extension and training. As Regional Director of the Department of Primary Industries she managed staff with many grants and research projects, including some of her own. She was given a Public Service Award for this work. Now she works part-time in her own goats-only veterinary practice and consultancy.

Sandra has years of advocacy work in promoting goat health and is currently the President of the Australia New Zealand College of Veterinary Sciences Small Ruminant chapter.  She has also held voluntary roles in the Australian Veterinary Association and was given a Meritorious Service Award.

LEONIE ROBISON
DIRECTOR COMMUNICATIONS

Leonie is a practicing visual artist and exhibits regularly around Sydney. She started her working life as an industrial chemist, then taught in various capacities in high schools and TAFE while raising children. She has a BSC degree, a Graduate Diploma in Education, an Advanced Diploma of Fine Arts and a MArt.

Leonie has been involved in voluntary work throughout her adult life, including cofounding Lyrebird Arts Community. Leonie is passionate about health and environmental issues and is committed to improving the lives of Alpha-1 Antitrypsin Deficiency sufferers.

JANE GORDON
TREASURER

Jane has a Bachelor of Economics and Bachelor of Commerce from the Australian National University. She was admitted to membership of the Chartered Accountants Australia and New Zealand in April 2004. She has worked in a variety of financial management roles predominantly in the Australian Public Service during her career, including at the Commonwealth Department of Finance and the Treasury. She currently works for the Department of Agriculture, Fisheries and Forestry in a finance director role.

Jane first heard about alpha-1 antitrypsin (AAT) deficiency through a family member’s diagnosis, in this case her father who was severely AAT deficient and learned of his ZZ genotype in his mid-50s. Augmentation therapy was, and remains, unaffordable in Australia despite advocating efforts.

As a keen hiker and trail runner, it was through the Alpha Trails Events championed by Mark Lloyd that Jane learned about A1OA. She is pleased to join the Board as Treasurer from August 2025 to help support the charity achieve its strategic goals to find an affordable cure for AAT deficiency.

Gerri Simmons
Board Member

Gerri has over 20 years of senior and executive management experience, with a strong background in corporate and clinical governance across both large and small health service delivery organisations. A Registered Nurse and experienced non-executive board director, Gerri holds a Bachelor of Nursing, an MBA, and has completed the Company Directors Course.

Gerri’s connection to Alpha-1 Antitrypsin Deficiency is deeply personal. She was diagnosed with the ZZ genotype following her sister’s ZZ diagnosis, and her mother’s identification as an MZ carrier with associated lung decline.

Combining her personal journey with her professional expertise, Gerri is passionate about advocating for individuals and families living with Alpha-1 and the fight for a cure and equitable access to treatment.

Mark Lloyd
Director Marketing

Mark received a Bachelor in Business Management (Marketing) in 2011 from the University of Cardiff , United Kingdom. Since then he has worked in a variety of marketing roles and currently works as an Group Account Director for an advertising agency in Sydney. He has extensive experience across Digital Marketing and has joined the Board to help bolster both the fundraising and marketing aspects of the charity.

After seeing the impact Alpha-1 had on his own family, Mark is determined to help the charity where he can, including a fundraising event in 2022, where he will be cycling from Sydney to Melbourne.

OPEN POSITIONS
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Open vacancies (register interest through the contact page).