PFP - See Rare Diseases Page

2012 was the first year we entered as a charity bond and despite being both amateurs at cycling and at the fundraising process - we managed to end up 5th out of the 93 charities in terms of funds raised for the cause. What most people don't realize is that most of the 122 riders who joined our cause were friends and family, who joined not because they love cycling or were super fit and looking for a challenge - but because it is a cause so close to all our hearts and it is something that could affect and every one of us and the more awareness we can create, the more change of sufferers of rare diseases finding answers and hopefully cures. Cycling 95kms is a challenge - particularly for individuals who don't train consistently - but our motivation was that we had our health and this was the least we could do to create awareness for sufferers of rare illnesses who didn't have the option to "give up" when the disease got too tough!

This is the case for most Rare diseases, of which there are over 7000, of which, approximately only 350 have available treatments. Of all rare conditions, 50 % affecting and 35% of all deaths in the first year of life being a result of a rare condition. Regardless of the condition, generally the challenges for all patients are similiar, with a feeling of being isolated as well as funding being the 2 major issues faced. With all the funds raised from our events, we aim to assist our patients fulfill numerous needs. Be it, medical aid subsidies, travel grants, assistance with consumables, testing and doctors fees, we always try assist.

Pedalling 4 Pompe, do not have a paid PR or marketing agency to assist with publicity - but despite this we have had multiple radio and print interviews and managed to create valuable awareness about Pompe Disease and other Rare Diseases. Just from last years participation in this race we had a 200% increase in testing and diagnosis from patients who heard/read about our cause and had symptoms which doctors were previously unable to diagnose and treat. All the funds raised go towards assisting sufferers with treatment costs, aiding potential patients with costs associated with diagnosis as well as funding the development of rare disease specialists in South Africa.

How will Pedalling 4 Pompe make a difference?                                                           

All funds raised will be used for the following purposes:

1.   Assist patients with initial diagnostic costs where necessary.

2.   Facilitation of newly diagnosed patients getting onto treatment without delay.

3.    Assist patients with medical aid enrollment and premiums.

4.   Provide support to newly diagnosed, as well as patients on treatment.

5.   Create awareness of rare diseases such as Pompe

6.    Fund on-going local research on Rare diseases.