What began as a simple challenge amongst friends and family to raise awareness of Pompe Disease using the Momentum 94.7 Cycle Challenge as a platform, has evolved into charity initiative which seeks to help as many children and adults with rare conditions. Pedalling 4 Pompe is the main fundraising event for the Rare Disease Society of South Africa.
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!
In brief, Pompe Disease is what is classified as a Lysosomal Storage Disease - the body does not produce the enzyme which is required to break down Glycogen - so this builds up and causes severe muscle damage, inevitably leading to premature death due to cardiac or respiratory failure. This rare disease was virtually unheard of in South Africa but came to light when family friends - Kelly & Frans du Plessis' 11 month old son was diagnosed after enduring months of medical testing. Infantile onset of Pompe Disease is usually fatal - many children dying before their first birthday - Juan du Plessis is now an active, bubbly 3 year old who goes to school and plays soccer despite being told he may never walk. There is no cure for Pompe Disease.
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.
If you would like to contribute to this very worthy cause, there are a number of ways to get involved
a) Sign up to participate at our next event -
b) Sponsor a cylist - if you would like to sponsor a member of the Pedalling 4 Pompe team, please complete the attached form and indicate the amount you would like to sponsor per kilometer of the race completed by the cyclist.
c) Donate branded goods for the goodie bag - We will be supplying each of our team members with a race goodie bag so any contributions would be gratefully received. We would request a quantity of 100 items which you can brand with your company logo.
d) Host an Its in our Genes Day at your company to create awareness of Rare Genetic Disorders - Allow your staff to wear jeans to work for a day for a minimal fee of R10 per person. The Pedalling 4 Pompe team will provide denim awareness ribbons for all participants as well as provide information leaflets and electronic communiqu to be distributed to all staff.
e) Make a donation if you would like to make a financial donation towards this very worthy cause, please log on to www.backabuddy.co.za/donate/charity/pedallingforpompe and search for the Pedalling 4 Pompe profile. Via this secure portal you can make a donation via EFT or credit card.
EFTs can be made directly to the Rare Disease Society of SA at:
Account Holder: Rare disease society of SA
FNB - Sunninghill
Branch Code: 251650
Account Number: 624 116 580 34
f) Promoting our cause in your newsletter/publications - If you have a newsletter that is distributed to staff members or clients, please consider promoting our cause in these communiqu. For any details or information or if youd like us to send you a short summary to include, please dont hesitate to contact us.
For any enquiries or for further information please email firstname.lastname@example.org
Thanking you in advance!
Sign up today to create more tomorrows.
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