Who We Are
Maré Smit
Founding member of Breathtaking, Maré Smit, was diagnosed with Cystic Fibrosis at the age of 3 months old and she currently is a 40 year old mother of two beautiful children. Her life has significantly been impacted after starting the Trixacar treatment in August 2022.
Since receiving this second chance on living life to the fullest her life goals include:
- advocating for the children and adults who have CF
- educating the parents and/or older patients who have CF, about preventing permanent lung damage, coping with CF on a daily basis
- Spreading hope for a better and longer life
Surrounded by a team of like minded friends and colleagues, they aim to advocate for people with CF in South Africa and support them on their journey to get the medication needed.
Unfortunately the current most effective treatment, Trikafta (CFTR modulator) costs roughly R422 000.00 per month which for most people is an unattainable goal.
Our Mission
Raising funds to support
We raise funds to support the South African Cystic Fibrosis Association (SACFA) in their pursuit to cover legal and administrative costs to create access to Trikafta at an affordable price.
Assistance to Patients in Need of Medication
Assisting patients who are currently on the generic, called Trixacar, with funding and/or are in need of money to get access to this life-saving medication.
Education and raising awareness
We want to raise awareness about CF in the national and global community. This way we can all support the CF community in help of funding and/ or moral support for coping and thriving with CF until there is a cure.
Creating a Platform of Hope and Support
The mission includes creating a platform of hope and support group for other people with CF and caregivers of children who have CF.
38.6% of CF patients received exclusive public health care in South Africa during 2018
57.9% of CF patients received private health care in 2018
2,000 different mutations in
6 different classes
Our Team
Maré Smit
Managing Director
Maré is qualified as an Paediatric Occupational Therapist with 14 year’s experience in training, program implementation and project management within the private and NGO sector.
Apart from her position at Breathtaking Fundraising Non Profit Company, she is a project manager of a NGO project focusing on monitoring children in the Early Childhood development sector and ensuring that they are ready for school.
She trains professionals and caregivers within the Early Childhood development sector and she is passionate about making a difference on community level – looking at individuals in a holistic manner, while benefiting the families and communities as a whole.
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 (3yrs and 9yrs)
- 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
Non-executive Director/ Administrator
Hanlie has been a family friend as well as administrative support to Mare’s family for many years.
Seeing firsthand the impact of this life changing medication, she hopes to use her administrative skills to support this organization 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 has valuable skills in networking and is a critical thinker when it comes to program implimentation.
Her passion to support others in need and motivating others to do the same is of great importance for the NPC.
She currently uses her extra time to spend with family and assist with operational support at Breathtaking Fundraising NPC.
Jurelma Lambrechts
Marketing & Social Media
Jurelma is a qualified Speech, Language and Hearing Pathologist who enjoys working and teaching individuals.
After taking a break from private practice and working abroad as a chief stewardess in the super yachting industry, she started her own company Healthy maid.
Healthy maid trains housekeepers in both the residential and business sector to a high standard of cleaning whilst using natural household products.
Jurelma is both a wife and a devoted mother of two beautiful children.
Being part of this social media team of Breathtaking Fundraising has been a no brainer…How could you not be a cheerleader for an inspiring individual struggling with her own health, whilst continuing to try and help other CF patients gain access to this live changing medication.
Some award winning stuff to be part of.
Marelie Lambrechts
Marketing & Social Media
Marelie is skilled in Fashion and Graphic design, passionate about all things beautiful and pretty.
Mare’s story inspired her; she wanted to contribute and be a part of the journey.
She strives to further touch the lives of others through her creativity and design experience.
Madeleen Müller
Beneficiary support
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.
Melissa Eggers
Social Media
Being in the field of social media and website development, Melissa is driven by a passion to use her skills and expertise to make a difference in the lives of others. Her knowledge and experience in these areas have allowed her to help individuals and organizations make a positive impact in the digital world.
In addition to her work in social media and website development, she has a strong commitment to education and is a qualified tutor. She finds great fulfillment in sharing her knowledge and helping young people reach their full potential. It is truly a privilege for her to be able to make a difference in someone’s life through education and mentorship.
Her involvement with Breathtaking Fundraising is a particularly significant aspect, as it allows her to combine her passions for social media and website development with her commitment to making a positive impact. Through her work with this organization, she is able to raise awareness about Cystic Fibrosis and help make a difference in the lives of those affected by this disease. She feels honored to be a part of such a meaningful cause and looks forward to continuing her efforts to support and empower those in need.
Ilze Schreuder
Travel Agent
Ilze is motivated to make a positive contribution towards the life journey of others through investing her ability to develop and drive business strategies, manage projects, generate support for worthy causes, and make a difference within her community.
As a seasoned business owner of an established Travel Agency and Business Consultancy she is well-versed in remaining dedicated and committed to make a success of projects she accepts responsibility for.
She considers Breathtaking a valued and necessary NPC and it is her desire to provide pragmatic support to make a difference in the lives of those affected by Cystic Fibrosis.
Ilze is well aware of the impact of the high costs of international travel and seeks to find solutions in this regard. As a mother of two children, she is a firm believer in taking hands and driving dreams and visions forward, it gives life purpose and makes what seems unattainable – attainable.
History
- The first patients to use Trixacar 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.
- 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%.
- 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 40 years old, 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!
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