Monday, 14 May 2012

Pedalling for Pompe

This year we are trying to raise money for the cause below, as I have said perviously this cause is close to our hearts as Annettes Granson suffers from Pompe. Kelly has explained the cause clearer than we can below. I have added a Back A Buddy link that provides a pay portal that is easy to complete. Please donate it really is a worthy effort.

Pompe disease is a progressive, debilitating, and often, fatal neuromuscular disorder. The goal for our charity drive is two-fold: 1) To raise awareness of this rare disease. 2) To raise funds to assist possible Pompe patients with the costs involved of initial testing, as well as assistance in getting them on treatment. Due to the complexity of the drug used to treat this disease and its high cost, there is generally a very long wait before medical aids will pay for treatment. It is imperative that patients receive treatment without delay as any build-up of Glycogen in the muscle causes irreversible damage. All the money raised will be given to the Gaucher Society of South Africa – the only Lysosomal Storage Disease Foundation in the country. These funds will be used to assist patients who cant afford treatment, or who can’t cover the costs of the initial tests required to diagnose Pompe disease. It will also go towards continued research of the illness.

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