This week's PODCAST with Mario Corena & ''Vogliamoci Bene'', we welcome in Studio Sanremo special guest Heather Renton.

Heather is the Chief Executive Officer and Founder of Syndromes Without a Name (SWAN) Australia.

Heather is the mother of two children, one of whom has a rare genetic condition called FOXP1 Syndrome

So CEO Heather Renton founded SWAN Australia in 2012. She was inspired by her daughter who has the neurodevelopmental disorder, FOXP1 syndrome.

Before her daughter’s diagnosis, Heather was looking for a support group. There was none. She discovered SWAN organisations in the UK and USA and decided to start a chapter in Australia. “My mother brought me up with the attitude that if you don’t like something, you should try and do something about it, not simply whinge!”

Heather says. Today, SWAN Australia gives support and information to members across the country and is the peak national organisation advocating for the SWAN community that support families caring for a child with an undiagnosed or rare genetic condition.

Heather draws on her lived experience managing her daughter’s undiagnosed condition for over nine years. She established SWAN Australia to ensure other families did not face their child’s undiagnosed or rare condition unsupported

Heather is also a consumer representative on a number of different advisory groups and committees and is a passionate health and disability advocate.

Here are some of the advisory groups :
- Melbourne Genomics Health Alliance Community Advisory Group.
- National Congenital Anomaly Advisory Group.
- Human Genetics Society of Australasia – Education Ethics and Social Issues Committee.
- Undiagnosed Disease Network International.Rare Disease Now Community Engagement Committee.
- Rare Connect Undiagnosed and FOXP1 – Moderator.
- Genetic Undiagnosed And Rare Disease (GUARD) Collaborative.
- Discipline of Genetic Counselling, University of Technology Sydney.
- QUOKKA Consumer Advisory Group.
- Healthy Trajectory – Families Council.

In this PODCAST we ask Heather the following :
· Tell us a bit more about Heather before SWAN Australia, kids etc.
· What is a “typical journey” for SWAN families
· What is the impact of a diagnosis or not having one?
· Is there any support for the Carers and other siblings?
· What are the effects on the Mental Health and Wellbeing of both the child and their carers/siblings
· Is SWAN Australia only in Victoria. What do other states do? How do they get support?
· What about the research into these syndromes without a name? Is there any funding?
· What is GUARD?
· How does one donate?

Join SWAN community on various social channels such as Facebook, Instagram etc and website is :
https://swanaus.org.au/

This interview was with a truly inspirational woman, who has to not only face her own day to day support and care of her own daughter but to help so many out there in Australia is truly remarkable. A true Quiet Achiever who demonstrates the passion of a loving mother/carer and community minded hero.

So don't disappoint yourself, I urge you to listen to this fantastic PODCAST via the link - https://www.radioitaliana531.com.au/vogliamoci-bene---mario-corena-podcast.html

🙌

So let's start the conversation today!
Mario
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