Community News

Robin Lewis receives 2021 Winn/Byrd Award for Adults with FA

Sep 8th, 2021

Robin Robin hiking

Congratulations to Robin Lewis, recipient of the 2021 Amy Winn and Christopher T. Byrd Award for Adults with Fanconi Anemia. Robin was born in Pretoria, South Africa and was diagnosed with Fanconi anemia (FA) at the age of 25. Despite the challenges of FA, Robin believes that FA has given him a new chance at a life filled with a positive outlook on his goals, attitude, perspective, and the planet. “I hope to inspire others to live a life full of love and appreciation.”

To enact this mission, Robin and his wife, Jolandie, started Numinous Expeditions in 2017. Numinous Expeditions is a nonprofit that carries out environmental, humanitarian, and animal welfare projects with a focus on ethical solutions and long-term outlooks. Their goal is to visit as many countries on the African continent as possible in their home-built expedition truck “Betsy”. In each country, they aim to complete a project catered to the needs of the local community. To date, they’ve completed nine community projects. Their latest project is called Eco-Flow and aims to educate 1,000 school children in rural South Africa about the benefits of sustainable farming, health, and dietary practices.

“Our focus embodies the three elements that exist on our beautiful planet: humans, animals, and nature. They can’t always be in harmony, but it is our pleasure to attempt it. Our projects tend to come our way naturally, and I truly hope we will be able to make a lasting impact on the world around us.”

Robin's acceptance speech

The Winn/Byrd award helps Robin and Jolandie start the next chapter of their journey. Importantly, it’s allowed them to add a much-needed housing section to “Betsy”. If you would like to learn more about Numinous Expeditions’ work or provide support, please visit their website at www.NuminousExpeditions.co.za

Robin is dedicating their road trip across the Earth to FA families and the FA community. He will help educate others about FA and hopefully motivate others with serious health conditions to take action by sharing his own story. His positive outlook on life and drive to improve the lives of other people is truly inspiring. “I look forward to sharing our venture with the FA community for years to come and wish all of you good health and true happiness.”

​Read Robin’s Acceptance Speech

I’d like to start off by saying what a great privilege and honor it is to have been selected as the recipient of the 2021 Amy Winn and Chris Byrd Award for Adults with FA.

It is unfortunate that I cannot thank you in person, but hope to express my gratitude from afar.

I’ve been overwhelmed by the thought of receiving this award in memory of Amy Winn and Christopher Byrd’s inspiring lives and outlooks. Their positivity and love for life is what we strive towards, and their stories truly inspire many to reach out and appreciate the gift that each day represents.

Fanconi anemia swept in and rocked our lives to the core. For many of you it has been a source of great heartache and pain, and the suffering you have endured is only testament to your strength. For us, it has also inspired a second chance. FA brought an abrupt and eye-opening experience to our lives. We could not have imagined our journey up to this point, although it has been very challenging and painful at times, we now see beauty in our everyday lives that I can only describe as an innate gift.

Since my journey started, FA has changed my perspective and saved a lifetime of chasing a false sense of happiness. My mortality has been a motivating factor for inspiring change in how we appreciate all of creation, and what purpose our lives have.

I could not have achieved this highlight of my life without the love and support of my wife, friends, family, and our Creator. I hope to live up to this award, and hope to inspire others to live a life full of love and appreciation.

We have to ask ourselves what meaning our lives have to others, and to ourselves.

Do you chase your dreams? Do you stare at the stars, and smile at the sunsets? To be loved does not compete with being able to love. Having a passion for compassion can sometimes put you in challenging situations, but is almost always worth it. A couple of years ago I made an oath that would shape our lives and decisions. It would ultimately lead to this moment, and is proof that the universe conspires with you when you follow your destiny without hesitation or fear.

I intend to stick to my oath, and I’m in the fortunate position to have a wife that would risk a full life, to make the most of my possibly limited one. Our mission will take us across 57 countries throughout the next 20 years. Our goal is to complete one meaningful project in every country we manage to reach. Our focus embodies the three elements that exist on our beautiful planet. Humans, animals, and nature. They can’t always live-in harmony, but it will be our pleasure to attempt it. Our projects tend to come our way naturally, and I truly hope that we will be able to make a lasting impact on the world around us.

We would also like to dedicate our planned road trip across the earth to Fanconi anemia families and spreading FA awareness. Some of the biggest supporters in our venture have been individuals from the FA community. I hope to accomplish what seems to many as impossible, but more importantly, to inspire some to reach for it even though the odds are against them!

This award will make it possible for us to complete most of the work we need to start the next chapter of our journey. It enables us to gain the supplies needed to finish building our expedition truck – Betsy.

To Lynn Frohnmayer, I’d like to thank you for all of the years of exceptional work you have dedicated towards giving hope to others. I commend you as well as all of the other FA parents and families that have endured suffering beyond my comprehension. All of the FARF staff and researchers that have found passion in their work, it gives FA warriors hope that the right people are on the case, and finally to the donors that support the Fanconi Anemia research fund, you have chosen to put your trust and funding into a noble cause, and through your contributions have made a true difference in the lives and futures of many.

I look forward to sharing our venture with the FA community for years to come, and wish all of you good health and true happiness. Thank you!