About Us
About Us
Our Story
FANSCA (Fanconi Anaemia South Africa) was founded by Jolandie Lewis, wife to an individual living with FA.
After witnessing the lack of understanding and awareness about Fanconi Anaemia in South Africa, she set out to create a platform of support, information, and advocacy. FANCSA is built on the belief that we can make a tangible difference in the lives of South Africans affected by FA.
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We've recruited 1,800+ potential stem cell donors in 5 African countries.
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We support FA patients and families from 3 African countries
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We are currently supporting 25+ FA families across Southern Africa
Core Goals
To ensure that no individual or family faces Fanconi Anaemia (FA) alone. We strive to be South Africa's trusted source of FA information, education, and support by providing practical, emotional, and educational assistance from diagnosis onward. Through collaboration with healthcare professionals, diagnostic teams, higher education institutions, and partner organisations, we promote early diagnosis, preventative healthcare, cancer surveillance, and best-practice treatment while working to overcome the language and knowledge barriers that can delay diagnosis and care. We continue to build a connected community where individuals and families affected by Fanconi Anaemia across Southern Africa can find support, understanding and hope.
Core Goals
To ensure that no individual or family faces Fanconi Anaemia (FA) alone. We strive to be South Africa's trusted source of FA information, education, and support by providing practical, emotional, and educational assistance from diagnosis onward. Through collaboration with healthcare professionals, diagnostic teams, higher education institutions, and partner organisations, we promote early diagnosis, preventative healthcare, cancer surveillance, and best-practice treatment while working to overcome the language and knowledge barriers that can delay diagnosis and care. We continue to build a connected community where individuals and families affected by Fanconi Anaemia across Southern Africa can find support, understanding and hope.
5 Year Goal
FANCSA will build on its core goals by expanding patient support, strengthening healthcare partnerships, and advocating for equitable access to early diagnosis, preventative healthcare, and life-saving treatment for every person affected by Fanconi Anaemia in South Africa.
5 Year Goal
FANCSA will build on its core goals by expanding patient support, strengthening healthcare partnerships, and advocating for equitable access to early diagnosis, preventative healthcare, and life-saving treatment for every person affected by Fanconi Anaemia in South Africa.
Outlook
Fanconi Anemia (FA) was once considered primarily a childhood disease, with many children not surviving into adulthood. However, thanks to significant advances in research, especially over the last 30 years, supported by the Fanconi Cancer Foundation, many individuals with FA now live well into their 30s, 40s, and beyond.
TREATMENT ADVANCES
Bone marrow transplantation (also known as Hematopoietic Stem Cell Transplantation or HSCT) has seen remarkable progress, with a success rate of around 90% in FA patients today. These advancements have transformed treatment outcomes and extended lifespans.
ONGOING MONITORING
It’s important to remember that even after a successful transplant, individuals with FA continue to have an elevated risk of certain cancers, particularly later in life. Regular monitoring and early detection remain essential.
CLINICAL CARE GUIDELINE
For a comprehensive overview of FA, we recommend the Fanconi Anemia Clinical Care Guideline (5th Edition)—a thorough resource authored by expert physicians and care providers specialising in FA. You can find it on the Resources page.
Coping with FA?
Managing FA is about more than medical treatment, it’s also about emotional and mental wellbeing. Explore helpful articles, websites, and services that many in the FA community find supportive and inspiring:
Living and Coping with FA
Meet The Team
Jolandie Lewis
Founder & Executive Director
Jolandie’s journey with Fanconi Anaemia began in 2018 when her husband was diagnosed shortly after their wedding. Faced with costly consultations and limited local expertise, she quickly recognised the urgent need for better education, advocacy, and access to care for FA patients in South Africa. With a BA Law degree from the University of Pretoria and a strong sense of justice, Jolandie is passionate about prevention, early detection, and ensuring that all FA patients, especially those in state care, receive the support they need to thrive. She is also the co-founder of Matches on the Map, a flagship awareness campaign highlighting the critical need for diverse stem cell donors across Southern Africa. Jolandie enjoys sewing, researching FA, photography, and dedicating her time to FANCSA programs that create meaningful impact.
Jolandie Lewis
Founder & Executive Director
Jolandie’s journey with Fanconi Anaemia began in 2018 when her husband was diagnosed shortly after their wedding. Faced with costly consultations and limited local expertise, she quickly recognised the urgent need for better education, advocacy, and access to care for FA patients in South Africa. With a BA Law degree from the University of Pretoria and a strong sense of justice, Jolandie is passionate about prevention, early detection, and ensuring that all FA patients, especially those in state care, receive the support they need to thrive. She is also the co-founder of Matches on the Map, a flagship awareness campaign highlighting the critical need for diverse stem cell donors across Southern Africa. Jolandie enjoys sewing, researching FA, photography, and dedicating her time to FANCSA programs that create meaningful impact.
Justin Du Toit
Director
Dr. Justin du Toit is a Clinical Haematologist with extensive training in Internal Medicine, Infection & Immunology, and Bone Marrow Transplantation. He completed his MBChB at the University of Pretoria, followed by specialist training at the University of Cape Town. He also holds an MSc from Erasmus Medical Centre in Rotterdam and an MPhil in Haematological Pathology from UCT. He is the Bone Marrow Collection Director and Transplant Physician at the Wits Donald Gordon Cellular + Immunotherapy Centre and plays an active role in advancing transplant care in South Africa. A passionate educator, Dr du Toit founded South Africa’s first online training platform in bone marrow transplantation and serves on several national and international committees, including the South African Stem Cell Transplant Society and the European BMT Training Committee. He brings a deep commitment to patient care, medical education, and transplant advocacy to his role as Director of FANCSA.
Justin Du Toit
Director
Dr. Justin du Toit is a Clinical Haematologist with extensive training in Internal Medicine, Infection & Immunology, and Bone Marrow Transplantation. He completed his MBChB at the University of Pretoria, followed by specialist training at the University of Cape Town. He also holds an MSc from Erasmus Medical Centre in Rotterdam and an MPhil in Haematological Pathology from UCT. He is the Bone Marrow Collection Director and Transplant Physician at the Wits Donald Gordon Cellular + Immunotherapy Centre and plays an active role in advancing transplant care in South Africa. A passionate educator, Dr du Toit founded South Africa’s first online training platform in bone marrow transplantation and serves on several national and international committees, including the South African Stem Cell Transplant Society and the European BMT Training Committee. He brings a deep commitment to patient care, medical education, and transplant advocacy to his role as Director of FANCSA.
Rene Coetzee
Director Attorney
René is a qualified attorney who was admitted in 2023 after completing her BA LLB degree at the University of Pretoria. She has since been practicing in the field of litigation. With a strong passion for justice her involvement with FANCSA is deeply personal, inspired by her close friend, Robin, who lives with Fanconi Anaemia. Known for her warmth and compassion, René brings both legal insight and heartfelt dedication to her role. Outside of work, she enjoys hiking, exploring new places, sharing good food, and engaging in meaningful conversations. Her empathy and kindness make her a valued part of the FANCSA team and a friend to all who meet her!
Rene Coetzee
Director Attorney
René is a qualified attorney who was admitted in 2023 after completing her BA LLB degree at the University of Pretoria. She has since been practicing in the field of litigation. With a strong passion for justice her involvement with FANCSA is deeply personal, inspired by her close friend, Robin, who lives with Fanconi Anaemia. Known for her warmth and compassion, René brings both legal insight and heartfelt dedication to her role. Outside of work, she enjoys hiking, exploring new places, sharing good food, and engaging in meaningful conversations. Her empathy and kindness make her a valued part of the FANCSA team and a friend to all who meet her!
Robin Lewis
Patient Advocate
Robin was diagnosed with Myelodysplastic Syndrome at the age of 25 in 2018 and soon after received his Fanconi Anemia diagnosis. On 18 July 2018, he underwent a successful bone marrow transplant and has remained healthy since. Passionate about supporting FA patients and families, Robin works closely with the FA community to offer guidance and encouragement. He shares with his wife, Jolandie, the dream of one day ensuring that patients across Africa, regardless of income, can access life-saving bone marrow transplants in Africa.
Robin Lewis
Patient Advocate
Robin was diagnosed with Myelodysplastic Syndrome at the age of 25 in 2018 and soon after received his Fanconi Anemia diagnosis. On 18 July 2018, he underwent a successful bone marrow transplant and has remained healthy since. Passionate about supporting FA patients and families, Robin works closely with the FA community to offer guidance and encouragement. He shares with his wife, Jolandie, the dream of one day ensuring that patients across Africa, regardless of income, can access life-saving bone marrow transplants in Africa.
Answers to Questions That Inspire Your Giving Journey
We value your trust. Here you’ll find honest answers about how your donations are used to empower lives and create lasting change.
How are my donations used?
Every donation goes directly towards our support, educational and awareness programs. We ensure complete transparency and share regular updates about our impact.
Can I choose where my donation goes?
The exact choices depend on the charity or platform you’re using, but most will clearly show you the available options during the donation process.
Do you provide updates after I donate?
Once your donation is received, you’ll get confirmation and follow-up updates so you can see how your contribution is being used and the impact it’s making.
Answers to Questions That Inspire Your Giving Journey
We value your trust. Here you’ll find honest answers about how your donations are used to empower lives and create lasting change.
How are my donations used?
Every donation goes directly towards our support, educational and awareness programs. We ensure complete transparency and share regular updates about our impact.
Can I choose where my donation goes?
The exact choices depend on the charity or platform you’re using, but most will clearly show you the available options during the donation process.
Do you provide updates after I donate?
Once your donation is received, you’ll get confirmation and follow-up updates so you can see how your contribution is being used and the impact it’s making.
Answers to Questions That Inspire Your Giving Journey
We value your trust. Here you’ll find honest answers about how your donations are used to empower lives and create lasting change.
How are my donations used?
Every donation goes directly towards our support, educational and awareness programs. We ensure complete transparency and share regular updates about our impact.
Can I choose where my donation goes?
The exact choices depend on the charity or platform you’re using, but most will clearly show you the available options during the donation process.
Do you provide updates after I donate?
Once your donation is received, you’ll get confirmation and follow-up updates so you can see how your contribution is being used and the impact it’s making.
