Loss, lessons, and a lifelong legacy - Rachael Casella's story

Nicole is a patient advocate and health consultant. When she was diagnosed with advanced bowel cancer in March 2017, she was told she would likely die within two years.

Nicole then sought a second opinion, and found another medical team who were prepared to think in an innovative and personalised way about her health. Four years later, Nicole has had amazing results!

When not in treatment, Nicole is challenging our health system to work collaboratively, think bigger, and be accountable for the delivery of outstanding care to patients.

Tanya is the CEO and founder of Hearts4Heart, which she founded in 2011 through her own experience of living with heart disease.

Hearts4Heart is a national organisation supporting educating and advocating for patients living with heart disease. Through Tanya’s commitment and advocacy, Hearts4Heart has grown exponentially and is now seen as an expert voice in the field of patient education and support for heart disease, including arrhythmias. Following the success in Australia, Hearts4Heart has now extended to New Zealand.

As the CEO of the only cardiac patient group actively involved in market access discussions with government, Tanya has been successful in re-energising the Australian cardiac community with the patient access to therapies discussion. Early detection and patient access to therapies across the globe is Tanya’s goal.

Tanya’s passion to both raise awareness for heart disease and ensure patients have treatment and access to proven therapies has seen her establish relationships with key stakeholders including clinicians, physicians and health industry members.

After Agnes' daughter was diagnosed with sickle cell disease at 14 months old, she learned everything she could and soon discovered the limited treatment options that patients had access to.

Since then, she's become an advocate for sickle cell patients. With each person that's diagnosed having such a different experience with the disease, Agnes knew that greater knowledge and information was needed as much for patients as for their families.

With Rare Disease Day coming up on the 28th of February, The Patient Voice Podcast is proud to share Rachael Casella’s story.

Rachael is a campaigner and activist for genetic carrier screening, IVF education, and reproductive health. After losing her daughter Mackenzie at just 7 months old to spinal muscular atrophy type 1 (SMA), Rachael realised that genetic carrier screening could have identified the risk of this sooner, if only it had been offered to her and her husband during her pregnancy.

She has now dedicated her life - and her daughter’s legacy - to helping other parents access genetic carrier screening.

As an investigator with Mackenzie’s Mission, a research project for genetic carrier screening, and author of Mackenzie’s Mission, Rachael is a powerful force in the advocacy space.

Her dedication and commitment under circumstances that most find unimaginable, is breathtaking.

Lisa was diagnosed with lung cancer soon after the birth of her second child in 2014. At the time, she joined a clinical trial to treat her lung cancer.

After being aware of the limited options and access to treatments for lung cancer patients in Australia, Lisa began to work with the major players in the field, and advocate for access to medicines.

She met with the federal health minister in 2016, created a tip sheet to help patients with their submissions about accessing medicines, and has been influential in driving equitable change to authorisation of prescriptions.

Since 2014, Lisa has been a voice of change in the lung cancer community, challenging Australia’s perception of the disease and working to ensure patients get the best outcomes.

Alex Parker was born in country Victoria and diagnosed with Cystic Fibrosis at 6 weeks of age. She had a very normal childhood despite all the rigorous health routines to maintain her health.

But in her early 20s, her health started to deteriorate and she was in and out of hospital with lung infections. The future looked bleak until she was able to access an innovative new medicine.

However, she was only able to access it thanks to the generosity of her grandfather. So Alex and her family worked for more than four years to ensure others like her could access it in Australia.

Despite everything, Alex has established a successful career as a commercial advertising photographer, travelling the world to work on major campaigns.

She lives happily in Melbourne with her partner Michael, 4 year old daughter Ruby and dog Maxi.

Alex is joined by The Patient Voice Initiative Chair, patient advocate Jessica Bean.