People living with follicular lymphoma (FL) have always played a vital role in shaping our work; bringing lived experience to shape research, education and patient support.
As our work continues to grow and we look ahead to new ways for more people to get involved, this guest blog from Nicky Greenhalgh, a long-standing supporter and founder of the Living with Follicular Lymphoma Facebook Group, reflects on the last six years and the impact this community has made.
Shortly after the Follicular Lymphoma Foundation was established in 2019, I had the privilege of helping to develop how people affected by FL could shape the charity’s work, which we referred to as the FLF Super Supporters programme.
We brought together a group of people from around the world united by a shared goal – to improve the lives of people living with follicular lymphoma and help move us closer to cure.
None of us could have imagined what that would grow into.
Over the past six years, we have become a community within a community.Â
We come from different countries, cultures and walks of life. All with very different experiences of follicular lymphoma – from those newly diagnosed to those who have lived with it for many years. Some have undergone multiple treatments, while others have spent long periods on watch and wait.
What has united us is a shared commitment to helping others and shaping a better future where better treatments, and ultimately cure, become reality.
Alongside that shared purpose, something equally important has developed – connection. We have supported each other through treatment, uncertainty, milestones and loss of loved ones, forming relationships that have lasted far beyond any individual project.
While the relationships have been a key part, the impact of the programme has been significant.
Super Supporters have contributed directly to FLF’s research and patient programmes – helping to review funding applications across multiple rounds of the CURE FL research programme and ensuring patient perspectives remain central to funding decisions.
We have contributed to discussions on patient registries, biobanks, biomarker research, treatment preference studies and global patient surveys – challenging assumptions and highlighting what matters most to people living with follicular lymphoma. This wasn’t about providing scientific insight; it was about sharing our unique perspective from what it is like to live with FL.
"The FLF gives us a voice, you can tell this isn't just a tick box exercise they really listen to us and take on board what we say"
Beyond research, we have helped shape educational resources and patient communications, working to make complex science more understandable and accessible. Many of us have also shared our personal experiences in webinars, interviews and events, helping others feel less alone and more informed.
As the FLF’s approach to patient involvement has evolved, Super Supporters have been there throughout – contributing insight, feedback and lived experience at every stage.
When I reflect on everything we have achieved, I don’t immediately think about the projects. I think about the people.
The messages sent after scan results. The support offered during treatment. The laughter during meetings. The friendships formed across continents. And the unwavering belief that together we can help create a better future for everyone affected by follicular lymphoma.
"Meeting people and hearing people's stories has really pushed me to speak about my own diagnosis. At first I thought 'I don't want FL to define me' whereas now, I am a big advocate of raising awareness, speak openly on my own social media and running the marathon have really helped me"
This is what transformed a programme into something more: a community within a community.
Together we have helped shape the way the FLF works – embedding the patient voice across research, education and support.
As the Foundation continues to grow, we are looking ahead to the exciting next phase of how people living with follicular lymphoma and their loved ones can get involved. We’re expanding to create new ways to bring lived experience into our work and strengthen this community even further.
We’ll be sharing more soon.
Everything that follows will build on what this group has created – ensuring that lived experience remains at the heart of progress. So, to everyone involved, past and present, thank you.
Your generosity, passion and commitment have touched countless lives around the world, including my own. It has been one of the greatest privileges of my FL journey to stand alongside you.
