Breathtaking
Fundraising NPC
Supporting children and adults who have Cystic Fibrosis that reside in South Africa.
Our beneficiaries:
Children and adults who have Cystic Fibrosis that reside in South Africa.
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.
It affects mostly the lungs, pancreas, liver, intestines, sinuses and could cause severe reactive arthritis flares.
The mucus clogs lungs, causing breathing problems and making it easy for bacteria to grow.
This leads to repeated lung infections and permanent lung damage. Further damage is done to pancreas, resulting in Cystic fibrosis-related diabetes (CFRD). Treatment of arthritis becomes more challenging due to CFRD, as the cortisone has a negative effect on blood sugar levels.
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.
What Drives Us
Our Vision
Those who are impacted by Cystic Fibrosis in South Africa should have access to life saving treatment and supportive care for improved quality of life and a longer life expectancy.
Our Mission
Support
We give support, guidance and training to patients and families affected by Cystic Fibrosis.
If not possible to do it in person, everything is done online or via whatsapp video call.
Our main focus is currently supporting patients to get access to Trikafta via the access program and ensure funding for patients who are not eligible for the access program.
Raising Awareness
We raise awareness about Cystic Fibrosis through various fundraising and training events.
We have trained 129 Community health Care workers in 16 clinics about the signs and symptoms of Cystic Fibrosis.
Our Fundraising events focus on breathtakingly beautiful moments in life to raise funds for a disease that is breath-taking to people living with Cystic Fibrosis.
Fundraising
We’ve created a fundraising platform for patients to pay for medical expenses.
Any patient can have a fundraising project on our website. Some choose to share this via social media and others choose not to. This is up to each patient/ family.
Beneficiaries can have a fundraising project for their own medical expenses or to support our cause and the greater CF community.
Coordinate logistics
We coordinate donation of modulators and pursue more cost effective ways to get access to the most effective treatment.
Philanthropists, members from the public and Pharmaceutical companies have donated more than 11 boxes of Modulators for patients identified by the CF Specialists in South Africa or who are beneficiaries of Breathtaking Fundraising NPC.
Donate towards a project
Popular Projects
We have projects allocated to specific patients or to a specific cause.
Hospital Goodie bag for each newly diagnosed patient
There are about 100 newly diagnosed patients with CF each year. Each new patient receives a Hospital bag with a Brave book about Cystic Fibrosis, a brave medal and teddy bear. The package is filled with hospital activities and information about SACFA, Cystic Fibrosis and Breathtaking NPC. Depending on donations- some other small gifts are added. This year the package consists out of healthy vitamins, hair products, tablet containers, water bottle, pack of cards and/ or a diary. The toddlers received a balloon and playdough to play with in hospital.
Training: the Signs and symptoms of Cystic Fibrosis
In collaboration with the Western Cape Health Department we are training Health care community workers about the signs and symptoms of Cystic Fibrosis. Each clinic will also receive an A2 poster about the signs and symptoms of Cystic Fibrosis.
Training community members, medical staff and families about the signs and symptoms of Cystic Fibrosis is crucial for our strategy to identify, diagnose and treat patients effectively.
Breaths of Hope Events
Through our Breaths of Hope events we encourage people from our communities to raise funds and awareness about Cystic Fibrosis. These events are to celebrate the breathtaking moments in life in the midst of having a breath-taking disease like Cystic Fibrosis. All funds raised at these events are to assist us in our vision of access for all to modulator therapy. Companies or individuals are invited to collaborate with us to become sponsors for these events: this is what hope is all about: we all can work together to make breathing easier for a patient and also a chance to live longer. “It’s a matter of life and breath”
Upcoming Events
28 May - Annual Gala, Venetian Nights
Join our annual Gala and auction – we are having a masquerade ball!
Go to event
It’s a matter of life and breath
Any individual needs to breath to be able to live, but people living with Cystic Fibrosis struggle to breathe every second of the day and they are aware of this struggle with every breath they take. One medication can currently make it possible to breathe easier and there are still about 400 patients that does not have access to this miracle drug. Partner with us and make this possible for each person living with Cystic Fibrosis.
It’s a matter of life and death:
Many are struggling to breathe or are awaiting a double lung transpant. There is hope but our patients are in need of funding and we strive to make this possible for each and everyone.
find out
What’s Happening
Richard’s story of hope
I am Richard Burger and I have a genetic lung disease called Cystic Fibrosis.