Lived Experience Series – Resources

Carers and Families Stories

Joan Lefroy talks about her experience caring for someone with Pitt-Rogers-Danks Syndrome.

Laura talks about her experience caring for her two children with Angelman Syndrome.

Sherri talks about her experience living with and caring for her two children who also live with Ehlers-Danlos Syndrome.

Tim talks about his experience caring for his wife with Cystic Fibrosis.

Genetic Support Group Stories

Anna Hickey, leader of the Gorlin Syndrome Mutual Support Group, talks about supporting people living with Gorlin Syndrome.

Bronwyn, a representative of Leukodystrophy Australia, talks about supporting people living with Leukodystrophy.

Emily, co-founder of UsherKids Australia, talks about supporting children living with Usher Syndrome.

Heather, founder and CEO of Syndromes Without a Name (SWAN) Australia, talks about supporting people living with undiagnosed or rare genetic conditions.

Julie, founder of Spinal Muscular Atrophy Australia, talks about supporting people living with Spinal Muscular Atrophy.

Living with a Genetic Condition

Sr Julie Thomas talks about her experience living with Leukodystrophy.

George Helon talks about his experience living with Pallister-Hall Syndrome (PHS) and Gelastic Seizures.

Maximillian and Victor McDonnell talk about their experience living with Leukodystrophy.

Natasha Payne talks about her experience living with Huntingtons Disease.

Reva Blowfield talks about her experience living with Cystic Fibrosis.

Ayman talks about his experience living with Neurofibromatosis Type 1.

Kylie talks about her experience living with Neurofibromatosis type 2.

Georgia talks about her experience living with Alopecia Areata Universalis.

How has your genetic condition impacted you?

What is your experience with clinical trials?

What is your experience with genetic support groups?

What has been your experience with the health system?

Life insurance

How do you care for yourself?

What condition are you supporting?