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Dear Ride4Rare Team

I can’t believe that this year is our 7th year doing this crazy race.

Every year, we swear we will get fitter, earlier – we don’t.

Every year, we say the race will seem shorter – it doesn’t.

Every year, we say that’s its not possible for our team to be any more amazing – it’s totally possible!

And every year we adamant we won’t come back – and yet, here we are!

Let’s be honest – we love this race, and we love this team.

Earlier this week, I was helping my husband Frans set up his fundraising profile (Yip – we are the last to set it up every year), and we shared this video (see below). For those who are not aware, Juan, our son, was diagnosed with a rare condition in 2010 called Pompe disease. His journey and our struggle to get him on treatment, is the very reason why Rare Diseases South Africa exists today. Starting this organization was a cathartic journey which somehow gave purpose to our pain, and gave us an avenue to “do something” in a situation which felt so helpless.

So today, when watching the video of Juan riding his bike to school last week, I was moved again. Because this video encompasses everything that we stand for as an organization. It isn’t just a boy riding his bike to school, it’s a child who has battled illness his entire life, living past his “expiry date”, going to a “normal school”, riding a bike after they said he wouldn’t walk. This is a child who pushes through pain, and struggles every day so that he can LIVE.

So this weekend, when you are out on your bikes, in the heat, with sore legs and bum blisters, remember the purpose behind this race. It isn’t just riding a bike, its riding in honour of someone trying to live.

For all of you that have fundraised, asked friends and family to support your ride, pleaded with your boss to sponsor a km, please know, that those efforts allow us at RDSA, to continue advocating for people just like my son, patients who haven’t had a choice in what life has thrown their way, and families who have had to push through the impossible. Your mobility has benefited those without it.

From the bottom of my heart, thank you!

For those who are still stressing about last minute training – Its Friday – ain’t nothing going to save you now. Lol.

For those wanting to give their fundraising a last push – easiest way to do so is via GivenGain

For those wanting to know where to park – Shevaun has sent out an email with the exact locations.

For those wanting to change your mind about riding – you can’t – we need you.

Looking forward to seeing you all on Sunday at the hospitality tent. I promise to keep the beers cold, and the ice-cream frozen.

Kind Regards,


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