Media Highlights

View a collection of our media highlights

Media Highlights

All for Jane (The Border Mail)

The Border Mail -  All for Jane: Jill Kohne is raising awareness of Sanfilippo Syndome, a rare form...
Saturday, 31st Oct 20
Media Highlights

SHEPP LIFE RADIO SHOW & PODCAST: ANN THOMPSON'S SANFILIPPO S...

Ann Thompson shared her Sanfiilppo story in the Backstory segment on the SheppLife Radio Show and Po...
Monday, 12th Oct 20
Fundraising News

How an insidious, untreatable disease broke the heart of a B...

STEPS FOR SKYE bumps Covid-19 off the front page in ‘The Ballarat Courier’. Thank you to this r...
Tuesday, 28th Jul 20
Media Highlights

ABC Radio National: Earshot podcast - "Beyond the Cure"

Listen to the ABC Radio National Earshot piece ‘Beyond The Cure - how one family went from a devas...
Saturday, 25th Jul 20
Media Highlights

McCoombes family’s heartbreak and hope for four-year-old O...

The parents of a young boy dying of a rare and frightening genetic disease are calling on people to ...
Sunday, 28th Jun 20
Media Highlights

The Project 2020 - Childhood Dementia

Network 10's 'The Project' revisited the Donnell family with an update on work of the Foundation and...
Thursday, 25th Jul 19
Media Highlights

VIDEO: Childhood Dementia: Heartbreak and Hope (TEDx)

Executive Director, Megan Donnell, recently delivered a powerful talk as part of aTedX Youth event i...
Thursday, 11th Jul 19
Media Highlights

A symphony of hope for Tilly (6PR Radio WA)

Kate Page, mother to Matilda Page, who is battling Sanfilippo Syndrome talks to radio presenter Chri...
Wednesday, 26th Jun 19
Media Highlights

RADIO: ABC Radio Focus program on gene therapy (ABC Radio)

ABC RADIO interview with Megan Donnell, and Elizabeth Finkel, science journalist, founder of Cosmos ...
Friday, 7th Jun 19
Media Highlights

VIDEO: Elizabeth Finkel on gene therapy (National Press Club...

Science journalist, 2019 Australian Society for Medical Research (ASMR) Medalist and Cosmos Magazine...
Wednesday, 5th Jun 19
Media Highlights

Hope for Jobe Viral Video

Hope for Jobe Launched on 15 May (international MPS Awareness Day), the Koistinen family are part of...
Wednesday, 15th May 19
Media Highlights

Chasing the Miracle (The Monthly)

"For Megan Donnell’s family, the DNA-altering revolution cannot come soon enough." Written by Scie...
Monday, 25th Feb 19
Media Highlights

VIDEO: Channel 7 Sunrise Program

Channel 7's Sunrise program featured a television segment on the Donnell family and the TGA announce...
Friday, 12th May 17
Media Highlights

VIDEO: The Sanfilippo Children's Foundation - Our Story so f...

Sanfilippo Children's Foundation... Our story so far! Meet the people behind the Foundation. This s...
Friday, 12th May 17
Media Highlights

The Audacity of Hope (Good Weekend Magazine)

Why time is running out for the Donnell family... Meg and Al Donnell's two children have a devastati...
Tuesday, 7th Feb 17
Media Highlights

VIDEO: 60 Minutes: Parent Power

Parent Power: A parent's love knows no bounds, especially when a child is diagnosed with a deadly di...
Tuesday, 7th Feb 17
Media Highlights

Strong Foundations (Nature Journal)

In 2016 freelance science writer, James Mitchell Crowe, had this article published in the British m...
Thursday, 22nd Sep 16
Media Highlights

VIDEO: The Project (Network 10) 'Race Against Time'

In 2014, The Project (Network 10) turned the spotlight on Sanfilippo with a story, entitled 'Race Ag...
Tuesday, 20th Oct 15
Media Highlights

VIDEO: 'This Woman's Work' (Hope for Isla and Jude)

Please go to http://www.hopeforislaandjude.com to buy the song "This Woman's Work" and donate. Isla ...
Friday, 5th Dec 14