PLEASE SPONSOR
The Grace Olivia Fund


$1,001.93
Fundraising Goal $10,000.00

My Message

The “Grace Olivia Fund” proudly supports the Women’s and Children’s Hospital Foundation who provide care and support for children with life limiting rare diseases and their families in South Australia.

Grace’s family received the heartbreaking news in 2014 when Grace was diagnosed with Type 1 Spinal Muscular Atrophy (SMA). On the 9th November 2014, 3 months after the diagnosis, Grace sadly passed away in her parents’ arms. She was only 10 months old.

SMA is the childhood version of Motor Neuron Disease. It is a rare genetic muscle wasting disease. It is associated with mutations in the survival motor neuron gene. It is the number one genetic killer of children under the age of 2. The disease not only affects the muscles you see like your arms and legs, but also all the muscles you can’t see, like your lungs for breathing, and coughing and swallowing.

1 in 35 people are carriers of SMA in Australia. Parents who are both carriers of the disease have a 1 in 4 chance of having a baby affected by SMA. The child has a 50% chance of being a carrier themselves and a 25% chance of not being affected at all

There is currently no cure for the disease. However, research into SMA has come a long way in the past couple of years. In December 2016, the FDA approved the treatment of the new drug, Spinraza (in the US). As recently as May 2018 the Australian Government announced it would provide subsidised access to Spinraza from June 2018.

The “Grace Olivia Fund” is motivated to raise more awareness of this disease within the South Australian community.

The aims of The Grace Olivia Fund

To provide awareness among medical professionals and the community.

To provide funding to the Paediatric Intensive Care Unit at the WCH.

To provide funding towards educating medical professionals with an interest in neurological diseases.

To provide funding into further research of the disease.

Event Date
Feb 1, 2018 12:00 AM

My Team

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My Supporters (7)

Bronwyn Anderson donated $50.00
Jun 12, 2019 9:19 PM
Boydy and Family left a message
Jun 11, 2019 10:36 PM
No words are meaningful enough, your doing well, keep going!
Boyd Moran donated $50.00
Jun 11, 2019 10:26 PM
Marilyn Anderson donated $30.00
Jun 9, 2019 7:16 PM
Danielle Ahearn donated an undisclosed amount
Dec 3, 2018 1:31 PM
Grace Olivia Trust Fund donated $547.23
Nov 1, 2018 12:00 AM
St Thomas More School Fundraising donated $314.70
Nov 1, 2018 12:00 AM