Pedalling for those affected by rare conditions

Pedalling4Pompe this year has embarked on a fundraising drive for Juan Du Plessis (6) from Sunninghill, a paediatric pompe disease patient. Pompe disease is a progressive neuromuscular disorder that causes the muscles to degenerate due to an accumulation of glycogen. It makes breathing and everyday tasks difficult and is possibly life-threatening.

Family and close friends will take part in the four-day race from Johannesburg to Durban from 22 to 25 April under the name Team Juan. The journey ahead aims to raise R100 000 to assist Du Plessis with much-needed treatment costs and hospitalisation in the United States of America where he will be assessed by the Duke Clinical Research Institute in North Carolina.

He is the son of founder and chairperson of the Rare Disease Society of South Africa, Kelly du Plessis who has assisted and supported countless rare disease patients in South Africa.

Du Plessis’ parents, Kelly and Frans realised that through their own trauma more needed to be done for other families in their shoes, and so they founded the Rare Disease Society of South Africa in 2012 to assist patients and families affected by rare conditions.

What began as a simple challenge among friends and family to raise awareness of Pompe disease using cycling events throughout South Africa as a platform, Pedalling4Pompe has evolved into a charity arm which seeks to help as many children and adults with rare conditions receive access to treatment and supportive care for improved quality of life.

Later this year, Pedalling4Pompe will ride for a purpose and make a difference by raising awareness for pompe disease during the Momentum 947 Cycle Challenge.

Rare Disease Society of South Africa is calling on the public to pedal for a cause, and create awareness about rare diseases and their impact on patients’ lives.

Details: info@pedalling4pompe.co.za