Mpumalanga resident, Robin Lewis, and his wife, Jolandie, will embark on a 10-year 64-country journey spanning three continents to spread global awareness around the importance of stem cell donation.
Robin Lewis and his wife, Jolandie, in hospital following his stem cell transplant in 2018. Robin was diagnosed with Fanconi Anemia, a genetic DNA repair disorder that can lead to bone marrow failure, leukaemia and or solid tumors in the body.
The pair, who will start their Matches on the Map journey from their hometown Nelspruit in August, will be travelling an estimated 110 000 kilometres through Africa, Europe, and Asia in their one-of-a-kind custom-built motorhome affectionately known as “Betsy”. The vehicle is an aged fire truck that has been converted to dash on “used” cooking oil to be more sustainable and save on diesel costs.
The husband-and-wife duo was inspired to hold on this project, following a propitious stem cell transplant after Robin was diagnosed with Fanconi Anemia – a genetic DNA repair disorder that may lead to bone marrow failure, leukaemia and or solid cancerous tumors.
The chance of finding a matching donor is like a needle in a haystack given the number of donors registered worldwide, but thankfully Robin went on to maintain a haploidentical (partially matched) transplant. This was the only matched donor available for Robin in the world.
Lewis hopes that they can encourage patients who find themselves in a similar situation. Their objective is to sign up thousands of donors in partnership with the South African Bone Marrow Registry (SABMR), as they journey through each continent, starting in Africa.
“If it wasn’t for the stem cell transplant, I would not be here today. Since then, we’ve been plotting ideas of how to raise greater public awareness around stem cell donation, and that’s how ‘Matches on the Map’ was born.”
The aim is to add diversity not only to the SABMR but registry databases in countries they will be travelling to with the goal of finding matches for patients en route.
Lewis says planning the expedition has taken hundreds of hours of research, looking at routes, locations, border crossings and safety concerns. This while at the same time building Betsy which has taken up the most fraction of four years.
“After my transplant five years ago, my wife and I started planning the trip with the hope of changing the world. Our position was very ambitious, and we soon realised that we couldn’t carry out it alone. As Fanconi Anemia nearly claimed my life, we decided that we would also focus on establishing support groups for patients with this disease as we produce our way through various countries, meeting up with families that are affected, and sharing their stories.
“Building the truck has taken us four years and we can’t wait to access on the road with Betsy and officially access the Matches on the Map project underway. We’re very grateful for the SABMR, who will be assisting us with stem cell donor kits, documentation, export and import logistics, marketing efforts and support every step of the way. They’ve been 100% behind us since day one.”
Nadia Chalkley, Head of Donor Recruitment for the SABMR says Matches on the Map will allow access to a broad and much more diverse spectrum of donors.
“Ethnicity plays a huge role in finding donor matches, especially for patients of colour. Currently, only 35% of our donor vulgar is of colour, which is not reflective of the demographic make-up of South Africa. This limits our ability to find matches for patients who are of African or Indian descent.”
“While we are making pace through our in-person community drives across the country and online donor registrations, we need to consistently educate and sign up donors to give all patients a fighting chance. This project will bring us closer to making our donor database more diverse. The more donors we maintain from various ethnic backgrounds, the greater the chances of a match,” she says.
Lewis explains there is still a lot of work that is required before Betsy takes off on her maiden voyage.
“We still gain a way to fade before Betsy gets on the road, but we are bold that we will gain her completed in time. We believe launched a crowdfunding campaign via Backabuddy in collaboration with the SABMR to assist us with ongoing operational costs on the road and to raise additional funds for the Registry’s donor recruitment efforts as stem cell kits and the processing thereof is quite expensive.”
“We want to appeal to corporates and the public to near on board and succor us fulfil this dream of making a meaningful change in the lives of patients who require a stem cell transplant. The likelihood of people from certain ethnic backgrounds finding a propitious match is a mere 37% compared to patients from European descent whose chances are 72%. As a survivor myself, I know what a harrowing experience it is to acquire to wait for a donor match when you’re running out of time.”
Since the launch of the crowdfunding campaign on BackaBuddy, over R2000 has been raised towards their fundraising target of R150 000.
Support this campaign on BackaBuddy:
https://www.backabuddy.co.za/help-robin-and-jolandie-find-matches
Alternatively, donate via Snapscan:
https://pos.snapscan.io/qr/HELPROBIN_AND_JOLANDIE
Campaign video: https://www.youtube.com/watch?v=uKdNly6F3iY&t=121s
Follow this Campaign
The Matches on the Map journey, can be followed on https://numinousexpeditions.co.za/ as well as the SABMR and Numinous Expeditions’ social media platforms: @sabonemreg on Facebook, twitter, and Instagram and @numinousE on Facebook and @numinous_expeditions on Instagram. The journey will also be filmed documented to share with the world on the YouTube channel – //www.youtube.com/@NuminousExpeditions”>https://www.youtube.com/@NuminousExpeditions
Become a donor:
If you would like to become a donor, contact the SABMR on 021 447 8638 or email: donors@sabmr.co.za. Financial donations can also be made via www.sabmr.co.za/donate.
About the SABMR
The SABMR (NPO) was established in 1991, motivated by the concern that although bone marrow transplants were a life-saving treatment option, they were only available to patients with a matching donor in their family. Today, the SABMR searches both locally and internationally for donors, thereby making collaboration with international registries and observing universal standards of practice essential.
Press release for immediate distribution: For more information, please contact Zane Groenewald- 082 602 0735 – Zane@backabuddy.co.za
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