The Grace Olivia Fund

The Grace Olivia Fund Contact information, map and directions, contact form, opening hours, services, ratings, photos, videos and announcements from The Grace Olivia Fund, Charitable organisation, 55 King William Road, Adelaide.

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.

Address

55 King William Road
Adelaide, SA
5006

Telephone

0408678028

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Grace’s Legacy

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.