Articles and media coverage
2024
- February 2024: Classic Ladies Foundation supporting DEBRA
- March 2024: Ambassador Dean Clifford profile
- April 2024: Ken Kayaking the Murray fundraiser. Adelaide Now, Herald Sun, Courier Mail, Daily Telegraph, Murray Valley Standard
- September 2024: Baby Ella’s brave battle
2023
2022
- December 2022: – Walk for Wings takes flight to help impacted Tasmanians – Eastern Shore Sun
- August 2022: – Tiny blister only sign of life-changing condition – 7 News
- January 2022 – Jamberoo unites for DEBRA Australia – Illawarra Mercury
- January 2022: – Mum shares details of childs painful routine – 9 Honey
2021
- December 2021: – I was told my little girl had just weeks to live – Kidspot
- August 2021: – Sydney girl’s skin blisters at the slightest touch – 9 News
- April 2021 – Pandemic brings fresh challenges for EB children – ABC
- February 2021: – Butterfly babies: The worst disease you’ve never heard of – 7 News
Archive
- January 2020 – The Sydney siblings living with a rare skin disease
- October 2019 – ‘Butterfly Kid’ To Spread Her Wings – Herald Sun
- August 2019 – Johanna prepares for fun run despite pain – Bayside Star
- August 2019 – Lylah’s Story – Rare Voices Australia
- August 2019 – Banyo champion walks Bridge to Brisbane for rare skin disease – The Courier Mail
- July 2019 – ‘Teaching student who suffers from a rare disease which causes her to have agonising blisters and rashes reveals how she stays strong despite the pain and insensitive comments from others’ – Daily Mail
- December 2018 – ‘Holding my daughter causes her to break out in painful blisters’ – Honey Mums
- December 2018 – ‘My Baby Is Nine Months Old And I Have Never Been Able To Hug Her’ – TenDaily
- December 2018 – “When my daughter arrived it was evident at birth something was wrong.” – Mamamia
- May 2018 – ‘My Skin Blisters And Peels At The Slightest Touch’ – Whimn
- April 2018 – Skin that tears like tissue paper; epidermolysis bullosa is the ‘worst disease you’ve never heard of’ – Townsville Bulletin
- April 2018 – Simone’s daughter was born with “the worst disease you’ve never heard of” – Mamamia
- March 2018 – ‘Our baby’s skin tears like paper’ – Kidspot.com.au
- January 2018 – Their skin is as fragile as the wings of a butterfly — the ‘worst disease you’ve never heard of’ – News.com.au
- November 2017 – Crinkling News – New hope for sufferers of deadly skin condition
- March 2016 – Myrtleford Times – Big Crowd for Brighter Days Festival
- May 2012 – Northern District Times – Rebecca Brewer Obituary
- November 2011 – Pittsworth Sentinel – DEBRA Day Mt Tyson School
- November 2011 – Pittsworth Sentinel – Lindsay Collier Cannonball Charity Ride Art Exhibition
- October 2011 – Sunshine Coast Paper – Woodward Family
- October 2011 – Pittsworth High School Newsletter – Student Volunteers
- October 2011 – Pittsworth Sentinel – Student Volunteers
