Did You Know?

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per year per patient for Trixacar
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People affected in SA

What is
Cystic Fibrosis (CF)

Cystic fibrosis (CF) is an inherited life-threatening disorder that affects the cells that produce mucus, sweat and digestive juices. It causes these fluids to become thick and sticky.

know the
symptoms

People with the condition can also develop a number of related conditions, including diabetes, thin, weakened bones (osteoporosis), infertility in males, and liver problems.

Can I use Trikafta/ Trixacar?

Trikafta is approved for patients 6 years and older with cystic fibrosis who have at least one F508del mutation in the cystic fibrosis transmembrane conductance regulator (CFTR) gene, which is estimated to represent 90% of the cystic fibrosis population.

we’re here
for you

We're here for patients with Cystic fibrosis to support them with fundraising, guidance, networking and supporting them each step of the way to get access to Trixacar.

Fighting Cystic Fibrosis in a Comprehensive Way

Working towards a future where all children and adults get the care and support they need to thrive.

There’s no cure for Cystic Fibrosis, but various treatments can help control the symptoms, prevent or reduce complications, and make the condition easier to live with.

research

Until now, Doctors were only able to treat the symptoms of the disease, but there is currently a new groundbreaking/ life-changing medication available that treats the underlying cause of CF.

community

Surrounded by a team of like-minded Friends and colleagues, we aim to advocate for people with CF in South Africa and support them on their journey to get the necessary medication.

popular projects/ causes

CURRENT

R4500

0.45%

TARGET

R1 000 000

SACFA

In our pursuit of access for all South Africans to the best available medicine, we will be giving our support to the Nel v Vertex Highcourt case by means of crowdfunding for the legal fees.

“You can’t have a system where you file your patents, [but then] you refuse to bring a product to market, or you have it at such an excessive price in a country with the highest inequality in the world, [and then on top of it] you don’t allow any generic manufacturers to come in at a lower price.” – Fatima Hassan, South African human rights lawyer and founder of the Health Justice Initiative in South Africa.

We believe Nel has a strong case against Vertex because they are abusing their patent rights and in doing so, withholding the right to treatment for all patients in South Africa.

Clearly no patient should suffer to a multi-organ disease like Cystic Fibrosis, while there is tablets available that can treat the underlying cause of the disease effectively.

This specific courtcase will need much more publicity in the meantime – so please share and if you can, make a donation.

This is the one thing that will make the medication available for all patients in South Africa.

Send us an e-mail at: mare@breathtakingfundraising if you should need an Art18 A certificate.

Once-off donation
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Breathtaking Fundraising NPC receives R400k donation to access medication

A Cape Town based organisation has received a generous donation of R400 000 to support individuals living with Cystic Fibrosis (CF) and address the significant challenge of medication accessibility in South Africa.

Breathtaking Fundraising, a non-profit that assists individuals with CF in SA to access medication and raise awareness about this debilitating condition, received the donation through a golf day event at Wingate Golf Course in Pretoria by donors TRX Electronics and Pachas Restaurant on 15 March 2024.

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.

CF is an inherited genetic disorder that thickens mucus in the body causing blockages in vital organs such as the lungs and pancreas. It can lead to recurrent lung infections, irreversible damage and hamper 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.

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 4 700 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.

 

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 underway 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.”

Thriving and Surviving with CF

Being able to have access to Trixacar, and to the people who supported my fundraising efforts, I say thank you.

Words will never be able to tell my story and the full extent of how this medication can change my life and many other CF patients’ lives.

The effectiveness of Trikafta, seen in clinical trials, outperforms currently available therapies regarding lung function, quality of life, sweat chloride reduction, and pulmonary exacerbation reduction.

Feedback after my first month on Trixacar is on video.

I wish many more South African CF patients could also access this life-changing medication and find new hope when hope is lost. That is why I started Breathtaking Fundraising NPC – to help others.

Every life matters. Hope is never lost.

Get involved

Take Action

At Breathtaking fundraising NPC, our partners are family. Their support, paired with individual donors’ generosity, allows us to power our programs that support CFers and their families. Allowing them to focus on what truly matters, their treatment, and being present for their loved one. 

Fundraise

Using our online fundraising platform, you can encourage your family and friends to join you in supporting individuals and families living with cystic fibrosis. It’s as easy as 1, 2, 3.

Events

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Sharing is Caring

We understand that not everyone is in a position to be able to donate or fundraise, but spreading the word and raising awareness for CF is just as crucial.

news & updates

CategoriesNews Success Stories

Dharma Breathes

My name is Dharma Bredell   I am 23 years old and just before my fifth birthday, I was diagnosed…

CategoriesNews Success Stories

Coolkids: Freezin’ for a reason

A group of friends aiming to create awareness of Cystic Fibrosis and raise R100 000 by sharing our daily cold…

CategoriesNews

Richard’s story of hope

Richard Burger was diagnosed with Cystic Fibrosis at the age of 13. He loves cricket and being active outdoors. Read…

Baby Juvan’s story

Fundraising Target: R 100 000 Raised:R1 210.75 Percentage raised:0.1 % Funds raised to date: 16 MAY 2024 Web Designer 1%…

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