The Rare Disease Society of South Africa (RDSSA) is calling the general public to pedal for a cause and create awareness about rare diseases and their impact on patients' lives and to raise funds for better care.
What began as a simple challenge among friends and family to raise awareness about Pompe Disease during the Momentum 94.7 Cycle Challenge, 'Pedalling 4 Pompe', the main fundraising event for the RDSSA, has evolved into a charity initiative that seeks to help children and adults with rare conditions.
2012 was the first year in which Pedalling 4 Pompe entered as a charity bond and despite being both amateurs at cycling and at the fundraising process, the RDSSA successfully managed to be placed fifth out of 93 other charities in terms of funds raised for a cause.
Rare diseases are disorders including those of genetic origin, and are life threatening or chronically debilitating diseases which are of such low prevalence, less than one in 2,000, that special combined efforts are needed to address them.
Comments Kelly du Plessis, chairperson of the RDSSA, "Rare disease patients form a minority of our society yet they receive little help or attention. Our acknowledgement and investment can make significant changes to their quality of life. With timely and accurate diagnosis and intervention, people with rare diseases can contribute significantly and positively towards society."
All the funds raised from the cycling event go towards assisting patients with treatment costs, aiding potential patients with costs associated with diagnosis as well as funding the development of rare disease specialists in South Africa.
Entry is limited to 250 cyclists and there is a sponsorship fee of R1,500 per rider. Entrants will receive their team jersey on admission.
