Our Inspiration

The South African support group for families affected by Fanconi Anemia has seen the recent loss of two young girls. Both of them on the waiting list for a potentially lifesaving stem cell/bone marrow transplant. As with many others, matches could not be found within their immediate family and the search for an unrelated donor match begun. Through this, we’ve learnt that ethnic diversity on the registry is CRITICAL in order to give EVERYONE diagnosed with a rare blood disease a fighting chance.

This inter-continental stem cell donor recruitment expedition was inspired by our own experiences with Fanconi Anemia, a stem cell transplant in 2018 and the hopes of paying it forward to others in a similar circumstance, all over the world. Every single person that sign up, could potentially be the ONE chance that someone needs to save their life!

In FA, the greater percentage of children and adults will at some point in their lives need to undergo the truly challenging procedure of a stem cell/bone marrow transplantation. This is also the case for more than 70 other rare blood diseases such as Leukemia. The stem cell registry is made up of willing individuals that sign up to be matched as donors. The chances of being someone’s match is 1 – 100,000 for Caucasians, 1 – 400,000 for other ethnicities. The only reason for this being, there are not enough diversity on the registries throughout the world. If a person is found to be someone’s life saving match – the donation process is non-invasive, and can be compared to a simple blood donation. The costs are covered, being on the registry is free of charge and signing up only requires four mouth/saliva swabs.

Our goal is also to connect different countries who do not have established registries with the SABMR in order to start up various recruitment programs in Africa. Identifying opportunities at medical faculties at Universities for instance can be the starting point for recurring recruitments in a specific country long after we have gone. This will create much needed awareness in various countries and ultimately grow the diversity globally. We’ll be there to start signing up!

“Through the jungles of Africa, European capitals, and over the peaks of the Himalayas. The route from South-Africa to Vietnam holds great gene pool diversity.”

How do we plan on doing this?

We have partnered up with the South African Bone Marrow Registry. They are essential to our mission and provide us with logistical support (courier costs of signed kits), donor drive kits, equipment and marketing material. They have the necessary resources to arrange biological import and export documentation for the stem cell donor kits outside of the borders of South Africa. Without this crucial link, our journey would be in vain.

Our Truck

To make all of the above possible, we needed a reliable vehicle that would toughen out the worst conditions and roads in Africa. We would have to be able to make mechanical repairs next to the road, and most importantly we would have to be able to afford it. By chance we came across an old retired fire department rescue vehicle – a 1995 Mercedes 1517 4×4, and we instantly knew she was “The One”. We named her Betsy.

10 Years | 3 Continents | 64 Countries

South Africa to Vietnam

Planning the “Matches on the Map” expedition has taken up hundreds of hours of researching possible routes, locations, border crossings and safety concerns. We intend to host the first recruitment events in our home town – Nelspruit, Mpumalanga, South Africa before setting off towards the Kingdom of Eswatini (formerly known as Swaziland). Eswatini is a landlocked country, and was the first border we crossed. Our aim is to do as many donor recruitment drives as possible in each country, and some countries like South Africa will offer us MANY opportunities to host such drives. During our first year we aim to visit the FA families in our network and to connect them with other FA families in South Africa and our neighboring countries such as Zimbabwe. Ultimately building a FA community in South Africa (and hopefully beyond) where families are motivated to support, collaborate and share resources with each other and neighboring countries.

Creating awareness about Fanconi Anemia:

Fanconi anemia (FA) is an inherited DNA-repair disease that may lead to bone marrow failure (aplastic anemia), leukemia, and/or solid tumors.

FA can affect all systems of the body. The types and severity of symptoms can differ widely from person to person. FA patients have an extremely high risk of developing squamous cell cancers in areas of the body in which cells normally reproduce rapidly, such as the oral cavity, vulva, esophagus, gastrointestinal tract, and anus. The incidence of head and neck cancer is 500-700 times greater in individuals with FA compared to the general population. In addition, FA patients develop these cancers at a much earlier age than people without Fanconi anemia. Patients who have had a successful bone marrow transplant and, thus, are cured of the blood problems associated with FA, are still at extremely high risk for these cancers. Regular screenings are critically important.

FA occurs equally in males and females. It is found in all ethnic groups. Research has added years to the lives of people with FA. Decades ago, children rarely survived to adulthood. Now, there are adults with FA that live into their 30s, 40s, and beyond. In late 2017, for the first time ever, there were more adults living with Fanconi anemia than children (according to FARF’s registry). This reflects an emerging population of adults that was not present even just a decade ago. This growth in the adult population could be attributed to the dramatic increase in survival following stem cell transplants over the last 20 years. As a result, more children are reaching adulthood.

For more information, guidance or if you would like to contribute towards much needed research please visit: www.fanconi.org

Our Income 

We have a range of handcrafted products that we sell at various local artisanal markets. The handmade nature of our products allow us to work from the truck while living on the road full-time. Have a look at our latest product on our shop link on our Boepens Bag page HERE.

We have also started a PATREON account which enables our followers to support us from as little as R92 / 5$ on a monthly basis. This will get you AD-Free content and other goodies to follow the adventure! Your contribution enables us to keep the wheels rolling and the stem cell donor sign-ups coming!