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Game on FA Team Ben

Game on FA Team Ben 

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About Game on FA Team Ben

Our son Ben was a happy and confident child. He met all his milestones from a young age and excelled at sport, particularly loving AFL and baseball. He showed a massive talent particularly at baseball. Around the age of 8, we noticed Ben beginning to trip unusually. We at first put it down to him being lazy and would often tell him to pick his feet up. After taking him to several specialists the diagnosis was shortened archilles and tightening of the leg muscles. He was given exercises. We would remind him often to walk heel to toe. Several specialists later the only answer we had was to stretch the muscles. Having faith in what we were told, it wasn't until Ben was 11 that we realised something was definitely not right. Ben had lost coordination and balance both in his legs and arms. Carrying a plate and cup at the same time had become impossible. So off to the GP we went. He was referred to a neurologist for further investigation. In the meantime he started getting dizzy spells. He was referred to a cardiologist who confirmed he had hypertrophic cardiomyopathy (heart disease) and following our explanation of his physical limitations, he suggested Ben may have FA. At this point we were thrilled to have a diagnosis. Until we googled it. Ben's Father and I were devastated by the prognosis of FA. It was a heart wrenching wait to get the results. Our son Ben was diagnosed with Friedreich Ataxia (FA) in October 2016 at the age of 12. Its been a hell of a ride since his diagnosis, not just for our Ben but for the whole family. FA is a debilitating, life shortening degenerative neuro-muscular disorder, which affects about 1 in 30,000 people in Australia and New Zealand. It is most commonly diagnosed between the ages of 5 and 18 years and robs children and young adults of their mobility. FA leads to loss of muscle co-ordination, fatigue, vision impairment, hearing loss and slurred speech, scolosis (curvature of the spine), diabetes and serious heart conditions. It is caused by an inherited genetic mutation that limits the production of a protein called frataxin. This protein is needed by the mitochondria, which are the energy producing organelles in our cells. Without it the cells do not function properly resulting in debilitating medical problems, particularly neurological and cardiac. Although there has been significant progress towards treatments, today there is no cure. IMAGINE being a kid or a teenager and being told you have a degenerative muscle disease which will lead to a loss of muscle co-ordination, fatigue, vision impairment, hearing loss, slurred speech and then a serious heart condition - this is Friedreich Ataxia. 1 in every 30,000 affected. 1 in 90 are carriers. No treatment or cure. We are raising much needed funds for FARA. As you can imagine, their work is really important to us and all the other families who have been affected by this condition, and we want to do what we can to help. But there is only so much we can do on our own. You can help too by donating to our page. Any amount you can give makes a difference! You can also support us by encouraging others to get involved too. Please email the link to my page to your friends and family, or share it on social media. Thank you for your generosity and support -- it means a lot to us. # CUREFA

FARA

Imagine being a kid or a teenager and being told you have a degenerative muscle disease which will lead to a loss of muscle co-ordination, fatigue, vision impairment, hearing loss, slurred speech and then a serious heart condition - this is Friedreich Ataxia. 1 in every 30,000 affected. 1 in 90 are carriers. 

The Friedreich Ataxia Research Association (fara) is a not for profit organisation that supports research into treatments and a cure for Friedreich Ataxia. fara does not receive State or Commonwealth Government support and relies largely on the family and friends of Friedreich Ataxia patients and generous businesses within Australia and New Zealand to fund its research programs.  

Money raised will help establish our first clinical gene therapy trials in Australia, which will help find new treatments and a cure for Friedreich Ataxia.
Visit Our Website
http://www.fara.org.au/

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