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Trikafta Fundraiser

Personal message

My husband, Ruann, was born 37 years ago and diagnosed with Cystic Fibrosis. At that stage the prognosis was very bleak, but Ruann with the help of all the family members have been fighting with all we’ve got.

We encountered many setbacks through the years, but somehow Ruann managed to recover every time, losing a little bit of lung function every time.
CF sufferers  fight a daily battle to clear their airways of mucus. A 5-hour daily routine 24/7  that will match that of an Olympic sportsman must be followed in order to breathe. His daily  routine requires physiotherapy treatments, antibiotics, vitamins and digestive tablets as CF blocks enzymes from the pancreas to reach the stomach. Ruann went through times that he revolted against it, but soon realized that the moment that he relaxes his routine he becomes ill and loses even more lung function.

Through the years  there has been great advances in the treatment of CF and so the expected age for a CF sufferer is now 40 vs the 11 when he was born. Despite this Ruann’s lung function decreased steadily and is now around 43%. He uses oxygen at night and at times during the day depending on his health. His nebulizing, physiotherapy  and clearing of lungs takes him 5-6 hours a day, which is obviously exhausting and makes it impossible to hold down a job. He is a graphic designer so tries to as much as he can working from home.

He has battled the disease bravely for 37 years and is nearing the stage where he will have to undergo a heart/lung transplant when his lung function drops below 35%.  The stats for a lung transplant are not good: 50% chance of surviving in the first 5 years and off course all the other side affects that go along with it.

For years we could only dream about a “cure”, and now in 2019 medication is available that could transform the lives of CF’s completely. I quote  (Ruann has two F508del mutations)

The therapy, which treats the most common mutation in CF patients (the F508del mutation in the CFTR gene), was considered a dream 20 years ago — a dream “that you could make a small molecule that would actually correct the function of a mutant protein. 

Trials have shown that a 63% reduction in pulmonary exacerbations, so that’s a dramatic clinically and statistically significant reduction in the major complications. In addition, we hear lots of stories from patients about how their daily life functions have been fundamentally changed by the medicine.

To purchase one year's supply of Trikafta.
Trikafta will cost $311,503 annually, or $23,896 per 28-day pack. For us here in SA it comes to roughly R360,000 per month (R4.5 million per year).

 

Donations

  • Jan 31, 2020 - R 514.10
  • "Sterkte Ruann...dink aan julle! " - Liesl Louw

  • Jan 30, 2020 - R 508.75
  • "Baie sterkte Ruann! Jy is ‘n fighter" - Renée Olesen

  • Jan 27, 2020 - R 359.87
  • "Love jou chip ?" - Nadia & Al

  • Jan 20, 2020 - R 514.10
  • "Sterkte Ruann. Jacques en Verna" - Verna Vermeulen

  • Jan 20, 2020 - R 1 028.20
  • "Ek glo in jou Ruann. Jy is n legend!" - Wilna

  • Jan 19, 2020 - R 1 028.20
  • "Every little helps, love you xxx" - Mornay xx

  • Jan 16, 2020 - USD $ 73.16
  • "..." - Anonymous

  • Jan 10, 2020 - USD $ 37.02
  • "Hou aan glo en vertrou ???????? Dink aan julle!" - Luschka

  • Jan 09, 2020 - R 1 028.20
  • "Ruann jy is n legend en inspirasie! Love you Chip. " - Jaco en Yana

  • Jan 09, 2020 - R 1 010.00
  • "

    Sterkte vir julle

    " - EW

  • Jan 09, 2020 - USD $ 73.92
  • "Xxx" - Jess

  • Jan 08, 2020 - R 102.82
  • "????" - Mari

  • Jan 08, 2020 - USD $ 367.92
  • "Ons dink aan jou! Jy doen so goed! Byt vas, God bless" - Lezane

  • Jan 08, 2020 - R 2 056.40
  • "Dink aan julle xxx" - Miekels

  • Jan 08, 2020 - R 1 028.20
  • "Sterk staan Chip, Ons dink aan jou !!" - Pikkie

  • Jan 08, 2020 - R 102.82
  • "LOVE U BOTH U ARE IN MY Prayers " - Leanie

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Statistics

Donations to date

R 37 171.58

Fundraising target

R 4 500 000.00

Funds raised offline

R 20 000.00
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Ruann van der Hoff Medical Cause

Ruann van der Hoff Medical Cause Logo

My husband, Ruann, was born 37 years ago and diagnosed with Cystic Fibrosis. We would like to purchase one year's supply of Trikafta, which could transform his life drastically.