Everesting for Cystic Fibrosis

Predominately this thick mucus affects the lungs and digestive system, resulting in permanent lung damage and malabsorption of food.

Attempting a cystic fibrosis Everesting World Record, raising awareness and funds for @sacysticfibrosisa negotiations to facilitate access to a life changing medicine for South Africans living with cystic fibrosis. Jason van’t Slot is attempting a cycling 'Everesting Challenge' in under 17 hours - the act of cycling laps of a single hill, until the height of Everest (8848m or 29 000 ft) is accompl

ished in one ride and no sleep. Jason lives with cystic fibrosis, a life-shortening chronic lung condition resulting in thick syrup-like mucus lining the organs and slowly causing them to malfunction and fail. Complications include severe lung infections, diabetes, osteoporosis and other deficiencies. An Everesting Challenge was first accomplished by a cyclist with cystic fibrosis, after he gained access to a life changing drug Trikafta/Kaftrio which restores some normal function of the protein at cellular levels and reduces symptoms of the disease. His previous attempt without the drug was unsuccessful and deemed beyond his capabilities. Jason's fund raising efforts are twofold. Firstly, the fundraising initiative is to support legal and other costs necessary to facilitate access to new drugs that genetically modulate and correct the defective gene behind cystic fibrosis. South African Cystic Fibrosis Association SACFA (through the CF New Frontiers Committee) are happy to announce some progress in their engagement process with Vertex Pharmaceuticals. The aim of the process is to gain access to Trikafta (and other modulator treatments) for all CF patients in South Africa at an affordable price keeping in mind the county's poor economic status. (The current price to bring in a year’s supply of Trikafta is around R6million or $311 000). Jeffrey Leiden, Vertex’s chairman, president, and CEO says “We saw a 63% reduction in pulmonary exacerbations, so that’s a dramatic clinically and statistically significant reduction in the major complications,” Leiden said. “In addition, we hear lots of stories from patients about how their daily life functions have been fundamentally changed by the medicine.”

Secondly, funding will also go towards maintaining an updated South African CF registry, which provides statistical data on CF patients necessary for negotiations with Vertex Pharmaceuticals, and other stakeholders, including medical aids and the South African Health Department. The benefits of a South African CF registry extend beyond the negotiations will and prove to be invaluable in improving healthcare for all CF patients in South Africa. The Everesting attempt is taking place on the 14th of May at the Taal Monument, Paarl, Cape Town. Follow along here or on instagram at http://www.instagram.com/jasonvantslot/

To donate go to www.givengain.com/cc/everesting-for-cystic-fibrosis/ no amount is too small

What it's like to ride with cystic fibrosis - CyclingTips

10/11/2022

CyclingTips caught up with Jason Van't Slot to gain an insight of what's really like to cycle with cystic fibrosis.

South African Cystic Fibrosis Association
Ciovita
Enduren Nutrition
Cabal
jared_bmc
Quite Franckly Design, Animation & VFX
Cyclogel
TriEye Eyewear
Tokai Physiotherapy

What it's like to ride with cystic fibrosis - CyclingTips The story of a record-breaking ride to help those in need.

Short of breath, full of Life - Everesting Cystic Fibrosis World Record.mov

21/09/2022

Short of breath, full of life is the poetic depiction of Jason van't Slot - Cyclist/Speaker s Cystic Fibrosis journey. The poem draws a parallel between with Cystic Fibrosis and his recent World Record attempt. As he searches for Identity through the life threatening disease he is faced with difficult choices that define his path and set him apart. He smashed the Cystic Fibrosis World Record by 1 hour and 8 minutes. Jason continues in hope to raise awareness of Cystic Fibrosis and to raise funds for negations to bring life saving medication into South Africa at affordable prices. https://vimeo.com/751817421

If you want to know about this journey and how you can help please go to
https://www.givengain.com/cc/everesting-for-cystic-fibrosis/

Cystic Fibrosis (CF) came with a life limit expectancy until Trikafta/Kaftrio was developed, a lifesaving medication for this chronic lung condition. The cystic fibrosis community, Jason van’t Slot included, didn't know if a medication like this would be available in our lifetimes. Now it is available, but unfortunately because of South Africa’s geography and its financial cost it’s impossible for most in South Africa.

The aim of Jason van’t Slots ‘Everesting’ (the act of cycling laps of a single hill, until the height of Mount Everest (8848m or 29 000 ft) is accomplished in one ride and no sleep) is raising funds and awareness for the South African Cystic Fibrosis Association (SACFA) to support legal negotiations and other costs necessary to facilitate access to this life changing medication (Trikafta/Kaftrio) for all South Africans living with cystic fibrosis at an affordable price keeping in mind the county's poor economic status. This medication is available in selected first world countries, but at the moment those living with cystic fibrosis in South Africa have to go overseas to get their hands on it. It’s also financially impossible for most as the price for a 12 months supply of Trikafta is around R6 million or $311 000 ".

Credits: A Quite Franckly Design, Animation & VFX Film. Production Producer Grant Franck & Marius van Rensburg - Directed by Grant Franck — Poem Written and narrated by Grant Franck - Cinematography by Marius Van Rensberg - Sound Design by Greg Canning - Edit by Grant Franck & Marius Van Rensberg - Color by Grant Franck & Daniel De Villiers

Sponsors

Quite Franckly Design, Animation & VFX - Production Producer
MVR Films - Cinematography
Tokai Physiotherapy - Physiotherapist and video
South African Cystic Fibrosis Association - NPO Beneficiary
Enduren Nutrition - Natural Sports Nutrition
Ciovita - Cycling Apparel
Cabal - Premium climbing bike
jared_bmc - Custom Paint
Trieye.hu - Eywwear
Cyclogel - Gloves and Bags

Short of breath, full of Life - Everesting Cystic Fibrosis World Record.mov Short of breath, full of life is the poetic depiction of Jason Van Slots Cystic Fibrosis journey. The poem draws a parallel between with Cystic Fibrosis and his…