Tribute to Ashleigh Moore OAM

Ashleigh Moore OAM (1958-2014) – rest in peace

Passed away 3 Feb 2014.  Exceptional, inspirational leader and friend, sadly missed, but his legacy will live on.

“Ashleigh’s courage, commitment and determination will permanently be an inspiration to me.
He will always be in my thoughts.”  
 Jeff, Cancer Voices SA member

Ashleigh was a true pioneer for cancer advocacy at the state, national and international level.  

Ashleigh Survivorship charter launch

Ashleigh made a huge contribution. His volunteer efforts helped improve the experiences for countless others, yet so often this was while Ashleigh was going through cancer treatment himself, and his own health and future was uncertain.  

Ashleigh recognised that patients needed their voice and the patients perspective to be heard, along with shaping good systems and not relying on good luck to get you through. 

His mission was: 

To use his experience to help smooth the path for others, to speak up, speak out and work effectively to demand change. 

To rail against inequity and injustice, so ‘worlds best cancer treatment and care’ wasn’t only available if you were white, well-off , well educated or had particular types of cancer. 

To fight for access to services people need, not just what the health system wants to offer.

Ashleigh didn’t see barriers, he just went right through them. He wasn’t afraid to take things to the highest level. 
He knew the power of even one voice in creating change, but drew strength from knowing his voice was representing the collective voice of hundreds of others.

Ashleigh defied ‘cancer gravity’ so many times – we almost came to believe he might be invincible.  Sadly this wasn’t to be.   
He will be deeply missed.

A tribute by Cancer Voices SA was read at Ashleigh’s funeral service on 11 February 2014:  Ashleigh Moore OAM – a Cancer Voices SA Tribute  .

Ashleigh Moore Memorial Bike Ride and Ceremony

At the request of Ashleigh’s family, a memorial bike ride was held in March 2014.  About 80 people came out for Ashleigh’s Memorial Ride and Ceremony in the small park at Norton Summit. It was a lovely day and quite a few people who hadn’t been on the bike for awhile were motivated to ride in honour of Ashleigh.  He rode here almost every week, even after losing one lung to cancer.  His courage and determination in the face of adversity was an inspiration to all who rode with him.

Ashleigh’s wife Justine and children Brook and Erin scattered some of his ashes during a short ceremony.  
Photos from this event can be seen at https://www.flickr.com/photos/cancervoicessa/sets/72157643098474393.

Media tributes to Ashleigh

Media snippets showing Ashleigh’s work

Some of the inspiring media and video presentations featuring Ashleigh speaking about his cancer and advocacy efforts:

LIVESTRONG’s Chris Brewer interviews Ashleigh Moore (21 Jan 2011)LIVESTRONG BlogLIVESTRONG Blog

Interview with Cancer Voices SA (20 Jan 2010) LIVESTRONG BlogLIVESTRONG Blog

Ashleigh left a message in the poem chosen for his funeral service memorial card:

‘Miss me – but let me go.
…. bury your sorrow in doing good deeds’.

     

  

More photos at https://www.flickr.com/photos/cancervoicessa/sets/72157644459474267/

About Ashleigh

Ashleigh was a 4-times cancer survivor and passionate volunteer advocate, having been diagnosed with advanced Stage 4 head and neck cancer in 2005 and advanced Stage 3 lung cancer in 2010 and again in May 2012. Ashleigh had a young family and in 2012 was awarded an Order of Australia Medal for services to the community through Cancer Voices.. acknowledgement of our critical work, as “the voice of the people for the people affected by cancer” at the highest level.

 In 2005 Ashleigh was a health conscious, non-smoker and only occasional social drinker so a diagnosis of advanced Stage 4 squamous cell head and neck cancer witha grim prognosis was a rude awakening.  With a young wife and two-year old daughter at home and limited assistance, Ashleigh coordinated his own care. A strict regime of health and fitness that included a grueling cycling regime and being ever vigilant during treatment is what Ashleigh believes gave him the physical and mental edge to beat the odds and survive that cancer.  

In June 2010 and with a two-year old and a seven-year old daughter Ashleigh underwent a follow-up PET scan.  After an ‘unnecessary delay’ of 3 months Ashleigh was eventually told the results showed a ‘new’ Stage 3 cancer in his lung. Initially this was considered ‘untreatable’, then Ashleigh underwent a lobectomy to remove 2/3 of his right lung followed by maximum dose radiotherapy and 2 concurrent cisplatin chemotherapy regimes.

Outcomes were very encouraging, however a PET scan in May 2012 confirmed a recurrence of the lung cancer as a metastatic paratrachial node.  The recurrence was again initially considered ‘untreatable’.  Ashleigh subsequently was offered 4-D stereotactic image-guided intensity-modulated radiotherpay whith chemotherapy at the Royal North Shore Hospital, Sydney.  Follow up scans in Nov 2012 had shown “No Evidence of Disease”.

Ashleigh remained optimistic and committed to improving cancer treatment and care for others – in particular those suffering the most lethal and yet most under-resourced, lung cancer. There is so much to do to improve lung cancer outcomes through research, treatment, coordination of care, address the stigma and provide support for lung cancer patients and carers.

Cancer returned in June 2013.  He travelled interstate to access clinical trial treatment, but sadly this did not halt the progression of the disease.

Pre-cancer, Ashleigh had a diverse professional background that culminated in a five-year term as Director at Safework SA responsible for South Australia’s Occupational Health and Safety and Industrial Relations. As an MBA graduate and Fellow of the Australian Institute of Management FAIM he holds tertiary qualifications in the areas of Science, Safety, Quality, Management and Business.

In 2006 Ashleigh became the founding chair of Cancer Voices SA, the statewide 100% voluntary “grassroots” consumer advocacy group ‘raising a voice for those affected by cancer’. He has held senior advisory positions on peak bodies that include the SA Health Minister’s Complaints Advisory Council, Cancer Voices Australia, Cancer Australia and the SA Cancer Clinical Network.  It is in these positions that Ashleigh has been able to make a ‘real’ difference to cancer treatment and care services for other Australians.  Ashleigh is an aclaimed speaker having represented Australian cancer survivors at international events including the inaugural LIVESTRONG Global Cancer Summit, Ireland and the Go Public Global Cancer Leadership Forum, Canada in 2009 and the 2012 Australian Lung Cancer Conference.

On 26 Jan 2012 Ashleigh’s name appeared on the Australia Day Honors List as a recipient of the ‘Order of Australia Medal’ OAM for service to community health through Cancer Voices.  In Nov 2012, as Diamond Jubilee guests of the Governor, Ashleigh and his wife met with HRH Prince Charles the Duke of Wales. 

Other media that features Ashleigh can be found at the following locations:

Julie Marker

Three times metastatic colon cancer survivor.