Cape Town-based organisation, Breathtaking Fundraising has received a generous donation of R400,000 to support individuals living with Cystic Fibrosis (CF).
Breathtaking Fundraising is a non-profit that assists individuals with CF in SA to access medication and raise awareness about this debilitating condition, and received the donation through a golf day event at Wingate Golf Course in Pretoria by donors TRX Electronics and Pachas Restaurant on March 15.
The funds will go towards much-needed support for individuals living with CF who can only access life-changing medication from Argentina to help manage the disease.
Around 600 patients have been diagnosed with CF in SA, however, due to the complex nature of the disease and a high rate of misdiagnosis, it is estimated that at least 4 ,00 people may be living with the disease.
It is a lifelong condition for which there is no cure, with an average life expectancy of under 21 years. It is an inherited genetic disorder that thickens mucus in the body, causing blockages in vital organs such as the lungs and pancreas.
The condition can lead to recurrent lung infections, irreversible damage and hampers digestion and nutrient absorption.
Symptoms and health issues due to CF are wide-ranging and may include frequent sinus infections, diabetes, osteoporosis, arthritis, infertility and liver problems.
Until 2019, doctors were only able to treat the symptoms of the disease, however, given the life-shortening and debilitating health effects, treatments such as CFTR modulator therapies were developed by US-based company, Vertex Pharmaceuticals which drastically improved and extended the lives of patients, however, these therapies are not registered in SA.
A lawsuit is under way in SA against Vertex to allow medication access to patients at an affordable cost.
A recent announcement by the South Africa Cystic Fibrosis Association (SACFA) reveals that the modulator drug Trifakta is now available to Discovery Medical Aid members, however, this still leaves a significant portion of South Africans without access to treatment.
Managing Director of Breathtaking Fundraising NPC Maré Smit, who lives with CF said: “We deeply appreciate the support from companies like TRX Electronics and Pachas who are instrumental in advancing our mission to improve the lives of those impacted by Cystic Fibrosis. We believe that everyone should have access to this life-saving treatment for improved quality of life and extended life expectancy.”
IOL