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Clancy Pye

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Half Marathon for Ted

Story

We were blessed with a beautiful boy on the 12th June 2018 to become the little brother of our Amazing Grace. We were unaware that not only did we have a son and a brother but we had our very own Angel. After an exhausting year Ted was officially diagnosed with Angelman Syndrome on the 10th September 2019.

 

Angelman Syndrome is a rare neurogenetic disability caused by a problem with the UBE3A gene on chromosome 15. It affects mainly the nervous system and causes severe intellectual and physical disability. Symptoms include inability to speak and sometimes walk, movement and balance problems, sleep and feeding issues, seizures and frequent laughing, smiling and an excitable demeanour. You can learn more about Angelman syndrome here.

 

As a farming family in NSW, struggling in our third year of drought, this year has been an exhausting, frustrating, emotional and stressful time. What should have been a year filled with joy, milestones and unforgettable moments to cherish, instead we had extreme difficulty to get through daily tasks and an overwhelming feeling of loneliness, worry and heartbreak. 

 

By contributing to Ted's Angel fund, all donations will be going directly to FAST who WILL utilise money raised to support research efforts to facilitate a cure to Angelman Syndrome. By curing Angelman Syndrome the impact will domino onto all of the said conditions. 

However big or small your donation is, it is highly appreciated and it WILL make a difference. 

 

We will support FAST throughout Ted's life and we will participate in any clinical trials or studies we can to ensure we are doing our part to bring a cure to reality. Ultimately, we aim to raise money to facilitate the medical research needed to cure Angelman Syndrome which will likely also provide extremely valuable information for the development of cures for other conditions.

 

We believe Ted was supposed to be an angel because we are supposed to do something, and we will.

If you would like to join us in raising awareness or fundraising for your school or work fundraiser, or any other charity event please contact Sarah Johnston via Facebook. We would love for you too to become one of Ted's Angels.

Thankyou for being an Angel and supporting our Ted and FAST. 

 

Sarah, Tim, Grace and Ted xoxox

 

Donations made through this platform are secure and will be remitted directly through to FAST Australia.

 

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Foundation for Angelman Syndrome Therapeutics Australia Limited

The Foundation for Angelman Syndrome Therapeutics Australia (or FAST Australia) is an organisation of families and professionals dedicated to assisting individuals living with Angelman Syndrome to realise their full potential and quality of life through funding research, education, and advocacy. Our focus is treatments that will improve the symptoms of Angelman syndrome and ultimately research that will provide a cure.

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