Cycling from JHB to Cape Town for awareness for Erdheim Chesters disease

[Onlybikes]

To whomever it may concern

 

We are a group of three friends (Anthony Edwards, Holly Spencer and Jonathan Wareing ) looking to do something amazing , over the past year and a half we have experienced some life changing events that have spurred us into action to do something inspirational and meaningful and we need your help to achieve this. Anthony and Jonathan plan to cycle from Johannesburg to Cape Town in a total of 14 days with Holly as our support vehicle. We plan to leave Johannesburg on the 30^th of November 2014 covering a planned 150km a day leaving us with a few spare days in case of unforeseen issues .We plan on Staying over in Bnb’s and campsites along the route and visit many interesting places along the way .While we would happily do this just for the experience we have decided to use this as an opportunity to raise awareness for Erdheim Chester disease.

Anthony’s father, Duncan Edwards, was diagnosed with Erdheim Chester Disease roughly a year ago. This is an exceptionally rare disease with his case being the second ever recorded case in South Africa and one of 500 ever recorded in the world. The disease is incurable and terminal. There have been many treatments done to people with the disease to stunt the progression of the disease and prolong their life. Unfortunately none of these treatments have worked for my father or they are simply too expensive for us to afford. No one can really explain what the disease is or what it does as it affects all the patients differently. My father is unfortunate in that the disease has affected his Central Nervous System, this only happens to 10% of recorded patients, he is therefore unable to walk and is wheelchair bound. He also has lesions on the part of his brain which controls coordination meaning he struggles to use his hands to feed himself and perform other tasks. This part of the brain is also involved in cognitive thinking, so he quickly becomes confused and struggles with his speech. He is currently on palliative care and the doctors cannot tell us how much longer he will live, but with each week we can see progression of the disease.

We have decided that whilst attempting this tremendous task we would like to use it to raise awareness and raise funds for my father’s disease, ECD. Our plan is to approach various organizations, individuals and companies to ask for any funds that they may be able to sponsor us to complete the journey as well as donate to the research of this disease. We need funds for various expenses such as petrol, food, accommodation and repairs to both ourselves and the bicycles. All funds intended for donation will go towards the ECD Global Alliance based in America. This foundation aims to provide support to those suffering from the disease as well as to their families. They can also use the funds in order to fund further progression into the study of this disease so that more can be learned and hopefully future patients can be fully cured.

We believe taking on such a task is a great way of raising awareness as cycle touring gains lots of attention from the public eye while on the road , it is also a way of showing people what they are truly capable of both mentally and physically in a similar way a life threatening illness does .The cycle tour will also hopefully encourage people to use their bodies while they still are capable of doing so as from experience we have seen that it gets taken away from you often far earlier than expected .

Simply any amount or other form of help that you would be able to give us to help our journey in raising funds and awareness would be greatly appreciated. Any organization donating R 1000 or more will have their logo displayed in the support vehicles windows and possibly on the riders backs depending on the time of print of the cycling jerseys .

For any more information regarding Erdheim Chesters disease , our route , us or how to donate please feel free to contact us at anytime

Kind regards

Anthony , Holly , Jonathan

[Guest Frail4Life]

Awesome idea.

Keep us posted on your progress.

[theRussian]

Great! Keep posting. Let's see what we can rally for these courageous guys.

[Onlybikes]

Thanks very much guys , this will be our first real cycle tour and we are very excited about it !

[Onlybikes]

Good to see support from a veteran cycle tourer !