On Saturday 14 May at the Taal Monument in Paarl, Jason van’t Slot pushed his body to its limits when he cycled the height equivalent of Mount Everest as part of his GivenGain fundraiser for the South African Cystic Fibrosis Association (SACFA).
Climbing 8 848m in one ride with no sleep breaks is called “Everesting” and Jason broke the challenge’s world record for a person with cystic fibrosis by one hour and six minutes.
After completing his greatest physical achievement to date in 16 hours and 12 minutes, Jason said he felt “exhausted, depleted… and exhilarated,” because he knew all those metres, tears and sweat were for an extremely important cause.
Cystic fibrosis (CF) is a genetic disorder that causes thick mucus to build up in various organs, especially the lungs, resulting in serious respiratory and digestive complications. When he was born, Jason was given 10 years to live. Today, at 27, he’s beaten the odds, but only marginally. The life expectancy for CF patients in South Africa is just 21 years, compared to those in North America and Europe, who can now expect to survive well into their 30s, 40s or even 50s.
Research verified by SACFA estimates there are currently 700 people living with CF in South Africa, but it’s likely there are many more CF sufferers in rural areas with little to no access to medical insurance who remain un- or misdiagnosed.
Some of the funds Jason is raising through his cycling efforts will go towards maintaining a South African CF registry. This national database provides a wealth of benefits, including the enhanced ability to identify gaps in CF care, and the authorisation to conduct clinical trials of new treatments.
Fortunately, there is a highly promising CF treatment for those with certain mutations on the market today. Trikafta (or Kaftrio) was approved by the United States Food and Drug Administration only three years ago, but scientists are already predicting that the revolutionary drug will “cut the number of prescriptions prescribed every day in half and reduce the time spent on therapy per day.” Trikafta is proven to outperform currently available CF therapies in multiple ways, including reducing the severity of symptoms, thus improving quality of life.
However, Trikafta is only as effective as the number of people it can reach. Currently, this life-saving medicine is only available in certain first world countries. Due to patent laws and exorbitant cost – one year’s supply costs around R5.5 million – it is practically impossible for people with CF in South Africa to get their hands on the drug.
The primary objective of Jason’s fundraising initiative is to ensure that the CF community in South Africa isn’t left behind. The majority of his Everesting funds will financially support SACFA’s ongoing negotiations with Trikafta’s manufacturer, Vertex Pharmaceuticals, to bring Trikafta to South Africa at an affordable cost for South African CF sufferers. His target goal is, appropriately, R884 800.
Jason battled against freezing temperatures, diabetic blood sugar spikes and restricted lung function which “…makes it feel like sometimes you’re breathing through a straw” for a cause near and dear to his heart. Friends, family and even strangers joined him on his ride, motivating him and reminding him why the burn in his legs and chest was worth it.
Meanwhile, the fight to raise his target amount has just begun.
You too can support Jason in his heroic fight for equal access to life-saving cystic fibrosis treatment by donating to his fundraiser on GivenGain. GivenGain is honoured to be associated with another ordinary person doing extraordinary things in response to their community’s needs.
Alternatively, you could follow in Jason’s tyre tracks and hold a fundraiser of your own for a cause that’s important to you. Create a free fundraising project on GivenGain in less than five minutes here, and become your favourite charity’s next hero.