About Us
Read more about how the NPC started and our core volunteers.
Our History
The first patients to use Trixacar (Generic of Trikafta) in SA started using it during December 2021, after it has been approved for human use in October 2019.
Maré Smit started using Trixacar in August 2022 and after many conversations with people in the CF community, she realized that there is a sense of hopelessness: People do not have the funds to afford the life-saving medication, they run out of time to get the funds for the medication and for many it is just something too out of reach.
Within 3 hours after starting Trixacar, she experienced improvement in her sputum consistency and completely stopped coughing after 4 days.
She was able to breathe freely, sleep much better and had leaps of more energy. Within 4 weeks many of her other secondary symptoms also disappeared: Lung bleeds stopped, her glucose levels normalized and her lung function went up to 97%.
This is consistent with research findings and feedback from other CF patients who started using Trikafta.
She wanted other CF patients to also experience the life-saving effects of the medication without the stress/ burden of not having money to pay for it.
She sees herself as a unique piece of the puzzle within the CF population: Since many are children, bedridden and struggling to survive with CF – they are not able to raise funds for medical treatment themselves.
Maré is in good health currently and she has extensive experience in the NGO, private and health sectors as both Occupational Therapist and Project manager. She has been supporting many families in their day- to-day survival with sick children and also wishes to bring people new hope.
Families and people with CF should not just merely be surviving but they should be thriving!
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.
Important Milestones
99 patients
Collected medication from Argentina for 99 patients
R1 760 740
Raised for various patients and projects
Goodie Bags
Donated goodie bags for newly diagnosed patients worth R 100 000
129 Trained
Community Healthcare Workers trained to spread the word
History
Since December 2021 a group of parents started to collect medication for their children from Argentina due to patent rights registered in South Africa. As more and more patients joined this group of frontiers – it became apparent that there is a sense of hopelessness: People do not have the funds to afford the life-saving medication, they run out of time to get the funds for the medication and for many it is just something too out of reach.
As a result, Breathtaking Fundraising NPC, started to support these patients by collecting medication in Argentina on behalf of patients who were either too sick or too young to collect the medication themselves. Our main focus was to save money and raise awareness about these extensive challenges just to get tablets to be able to breathe.
We wanted other CF patients to also experience the life-saving effects of the medication without the stress/ burden of not having money to pay for it. (Bear in mind that the costs were almost R1 million rand per year at that time).
Parallel to this, we were constantly collaborating and negotiating with various pharmaceutical companies and CF specialists to ensure that there will be a more cost effective option in the future. Although some changes will take at least another 3 to 5 years, we needed to start with systemic challenges and started by training Community Health Care workers about the signs and symptoms of Cystic Fibrosis.
People living with Cystic Fibrosis DO NOT have the luxury of time to wait it out: many are on a double lung transplant list and struggle to breathe.
With your support – we can make it possible for each of these patients to live longer and healthier lives.
Team
Our Volunteers
Maré Smit
Managing Director
Maré was born in 1983 and was diagnosed with Cystic Fibrosis at the age of 3 months after being very sick and having failure to thrive.
She is a project manager of an NGO project focusing on monitoring children in the Early Childhood development sector and ensuring that they are ready for school at the age of 6 years.
She wears many hats all of which are very important to her and includes:
- being a wife to a loving and supportive husband.
- Being a attentive mother to her growing children.
- Always making time to laugh with her family.
- She values quality friendships and invests in making time for meaningful connections.
Lizeli Olivier
Non-executive director/ Chair
Lizeli has been a friend of Maré for nearly 20 years, sharing in her vision for the people and the future of South Africa. She is a fellow Occupational Therapist with a passion for health equality and health system efficiencies. Having completed her MBA with a focus on health innovation, she is attracted to causes that will have a lasting impact. In this regard, she is of the belief that through diligent stewardship in this project, lives will be improved and systems changed.
Hanlie Gelderblom
Hanlie has been a family friend for the last 24 years as well as doing administrative work for Mare’s father over decades.
Seeing how profoundly the medication has changed Mare’s life she hopes with the years of experience in the administration field that she will be able to assist the NPO to further their cause.
Jeanne-Louise Wiese
Operational Support
Jeanne-Louise lives in Hilton, KwaZulu Natal with her husband and 2 boys where she runs her own environmental advisory business for the agricultural sector mainly. She relocated during 2020 from Cape Town to Hilton with the aim of feeding her focus on her family and friends and being able to spend more time assisting Mare with operational support at Breathtaking Fundraising NPC.
Christelle Locher
Marketing and Social Media
Christelle is a Health Coach with a passion to see people thrive in every area of life. She lives in Strand with her husband and two daughters.
She enjoys using knowledge from her previous career in marketing to help communicate the heart and vision of Breathtaking Fundraising through our website and social media platforms.
Albie Olivier
I became part of the NPC when I volunteered to be one of their volunteers to travel to Argentina to collect medication for a Cystic Fibrosis patient. Volunteering to collect medication on behalf of a patient who is too sick to collect medication themselves led me to become passionate about this specific cause, seeing the major effect the medication has on CF patients. After I handed the medication over at the airport I realized I wanted to be more involved and help where I could. I contacted Maré, who started Breathtaking and offered my services in any way needed. Turns out, I ended up organizing fundraising events for Breathtaking.
Jane Venter
As an occupational therapist and as a friend of Maré’s, I became involved with Breathtaking Fundraising NPC as I have a heart for people and a heart for helping in the medical field. Rare diseases such as cystic fibrosis are never asked for, and so I hope the little I can do to help with admin, logistics, fundraising and awareness will go a long way.
Madeleen Muller
Madeleen is qualified as a Social Worker. She mainly worked in the field of adoptions, supporting children to be united with their forever-families.
She’s been focusing on the health and growth of her own family for the last couple of years and she has been motivated to be part of this NPC team to support beneficiaries and their families on an emotional level where needed.
We all need someone to share our struggles or our joys with, a listening ear, and a kind word at certain moments in our lives.
She especially enjoys the beauty of nature and her life is filled with adventures thanks to those around her. She loves spending time with her family and close friends.