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Stories

From real patient stories to tips on living well, hear firsthand from people who have faced blood cancer.

We’ve also got the latest research and advocacy news, as well as stories from our wonderful fundraisers and donors. You can subscribe to our e-newsletters and event news here.

A trial put Joe in remission for six years and counting

Joe participated ina trial which he says saved his life.

  • Amyloidosis
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Joe Mulaahmetovics and his family

MM13 trial results – bortezomib improves overall survival 

An amyloidosis clinical trial  described as “a staggering result, almost never seen in blood cancers”. 

  • Amyloidosis
  • Research
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Delaine Smith, CEO of the ALLG

Associate Professor Peter Mollee discusses issues around AL amyloidosis

Expert interview series: Associate Professor Peter Mollee discusses issues around AL amyloidosis  

  • Amyloidosis
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Dr Peter Mollee

Fahimeh has been in remission for seven years  

Fahimeh had an early amyloidosis diagnosis.

  • Amyloidosis
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Fahimeh and Carole

Long-term research breakthrough

Generous support helped deliver a research breakthrough that could lead to the first drug approved for patients with AL amyloidosis.  

  • Amyloidosis
  • Research
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Professor Peter Mollee

Early diagnosis made the difference for Vince

One week before his brother was diagnosed with amyloidosis, Vince discovered he carried the genes that predisposed him to the blood disorder.

  • Amyloidosis
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Vince O'Donnell with his late brother Laurie on the beach

European amyloidosis meeting highlighted the need to improve education

Vince learnt of the concerningly low rates of referral for people at risk of amyloidosis.

  • Amyloidosis
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Vince O’Donnell is a patient advocate for the Australian Amyloidosis Network.

New amyloidosis drugs and clinical trials update

A new class of drug may soon be available to Australian patients with significant cardiac AL amyloidosis

  • Amyloidosis
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Dr Hasib Sidiqi, right, with one of his “Mayo mentors” and amyloidosis specialist, Dr Morie Gertz, at the American Society of Hematology 2018 annual meeting.

“It’s an ongoing journey you’ve got to manage”

Cath felt “absolute relief” to be diagnosed with amyloidosis because she finally knew what she was dealing with.

  • Amyloidosis
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Cath Armstrong, right, and her eldest daughter, Rebecca.

In remission after seeking second opinion

Carole initially had minor symptoms before being diagnosed with amyloidosis.

  • Amyloidosis
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Carole Bartlett at work in a lab