All our programs aim to accelerate a transformative change in scientific research that will lead to better treatments and cures for FL patients.
We seek to:
➤ Develop precision treatments and cures direct to FL patients;
➤ Deliver treatments with lower toxicity;
➤ Close the gaps in FL research and drug development to drive quicker clinical testing;
➤ Maximize collaboration and funding in the field of FL for rapid development and prioritization.
At the heart of our mission is a commitment to prioritizing the needs and perspectives of individuals living with FL. The FLF serves as a vital bridge, connecting research and clinical communities with patients.
By fostering collaboration, we strive to integrate the valuable insights and experiences of those living with FL into the development process of innovative treatments, ensuring a comprehensive and patient-centred approach. Furthermore, we are committed to fostering diversity and inclusivity within the FL community, ensuring that every patient’s voice is heard and valued.
If you are living with FL and would like to hear more about ways to get involved in our work and research opportunities as they happen, you can sign up via our Help Shape our Work Form.
“Through driving transformational research, building strategic partnerships, amplifying each patient’s voice and being innovative with real-world data, we aim to find a cure for follicular lymphoma.”
Kate Rogers, CEO of the Follicular Lymphoma Foundation.
In pursuit of our mission, the CURE FL (CUrative Research to Eliminate Follicular Lymphoma) Awards grant program seeks to catalyze scientific research focused on FL. By focusing on high-impact studies this program supports a clear path to clinical trials and the hope of clear benefit and impact on FL patients.
The FLF, working in partnership with the Center for Strategic Philanthropy at the Milken Institute, developed the CURE FL Awards to assess and prioritize targets for philanthropic development for FL therapies. The goal is to engage top clinical scientists and researchers from around the world with the most innovative and exciting research projects, to fund innovative and impactful FL research, aligned with patient interests, and the ability to accelerate the path to clinical trials.
FL is a disease that for most runs a course of moving from periods of remission into relapse and back again, with many patients experiencing multiple relapses over the course of their disease – spanning years or decades. For a small number of patients, the disease progresses earlier, and they can face 5-year survival rates as low as 50%. Like many cancers, FL is genetically not just one disease, so finding cures will require a range of therapies to help a range of people. This rests on finding the right drug to be provided to the right patient at the right time.
An extensive review of the FL research landscape identified two areas as the most likely to lead to curative therapies available to FL patients as soon as possible, and are the focus of the CURE FL Awards program: cellular immunotherapy, CAR-T (chimeric antigen receptor T cells) and others, and also targeted therapies, either as standalone treatments or in combination with other treatments.
The first cycle of CURE FL Awards was launched in 2022, and run in partnership with the Milken Institute. This pioneering $2 million program provided targeted funding to four innovative projects that are closely aligned with patient interests and have a clear path to clinical trials.
With each distinguished research project funded through the CURE FL Awards program, we are moving one step closer to finding better treatments and cures for FL. We hope that the knowledge gained during these studies will lead to clinical trials of new cellular immunotherapies, targeted therapies or combinations that will provide hope and opportunity to patients.
Once established, the Centers of Excellence Program will aim first to accelerate a transformative change in FL research, and we are confident that breakthroughs and learnings will then directly feed into other disease areas. The FLF is already committed to forming collaborative partnerships with world-class organizations and research institutions – pushing the boundaries of research and delivering real impact for FL patients and beyond.
We expect this program will create partnerships with prestigious academic and research institutions around the world with significant skills in FL, as well as in many ancillary disciplines (e.g. -omics) that will build on strong multi-disciplinary approaches to help achieve our mission to find a cure for FL. We aim to galvanize momentum for FL research within the most talented teams of researchers, drive cooperation and synergism within an overarching network, and champion sharing of knowledge, resources, infrastructure and scientific breakthroughs.
Our goals will be to:
➤ Create and maintain a dynamic collaborative network of CoE institutions
➤ Leverage strategic partnerships to multiply our impact by joining resources and expertise
➤ Drive innovative technology and treatment development
“I believe the Follicular Lymphoma Foundation will accelerate profoundly the time when FL suffering and death are eliminated — and in doing so — deliver curative new drugs for 31 other forms of currently incurable human cancers with FL identical genomic targets.”
Prof. Jonathan Simons MD, Medical Director and Chief Science Officer of the Marcus Foundation and Trustee of the FLF.
The first of these strategic partnerships is with LLS – the Leukemia and Lymphoma society. More will be announced in 2024.
The FL Biomarker Discovery Program aims to find the best ways to identify and understand biomarkers related to FL.
A biomarker is a molecule, protein or gene which can be used to predict biological processes in the human body. Present in tissues, blood, urine, and other bodily fluids they can offer personalized insights into disease processes and treatment responses.
In March 2024, The Mark Foundation for Cancer Research and the FLF launched the Biomarker Discovery Program for the ASPIRE awards drawing on scientific, clinical and patient expertise. This collaborative effort invited research proposals aimed at enhancing technologies in follicular lymphoma to cultivate biomarkers crucial for patient care. By focusing on key time points in high-risk patients, such as transformation, early relapse (POD24), and the transition from early t(14:18) clonal B cells to FL, biomarker development can make a significant impact for these patients.
This program will fund a two-year research project, of up to $350k. Proposals will undergo rigorous evaluation by an esteemed panel of independent experts, a dedicated Patient Review Committee, and Scientific Review Committee.
In December 2023, The Mark Foundation for Cancer Research in collaboration with the FLF held a biomarker discovery workshop, convening a diverse group of clinical and scientific experts in lymphoma and new molecular technologies. The workshop aimed to explore the potential for developing biomarkers for FL, capitalizing on rapid advances in understanding FL’s complex biology, spatial multi-omics assessment technologies, and targeted treatment options. To ensure alignment with patient priorities, a global patient survey was conducted, with results discussed and interpreted alongside a Patient Representative Panel.
The workshop was a huge success, identifying the current barriers to biomarker development with a path forward, and integrated patient survey outcomes to guide the research development process.
The FLF’s patient survey conducted in November 2023, revealed important insights, from 714 respondents representing all stages of FL, from over 40 countries globally. The survey revealed that FL patients’ highest priority for biomarker development was to predict at diagnosis whether they’ll need treatment straight away, followed by predicting the likelihood of relapse or transformation.
You can read more about the survey and the results here.
The patient voice is central to FLF’s work, ensuring that funded programs incorporate the patient view. These insights from the patient survey are critical in understanding priorities for biomarker development and directly moulded the Biomarker Discovery Program grant.
PETReA Plus is a transformative project poised to revolutionize FL management. It aims to develop better treatments that cure FL patients and avoid unnecessary toxic therapies. It is a visionary UK observational sub-study of PETReA; an international trial focused on understanding the best use of rituximab, an antibody treatment, to improve outcomes according to risk groups. Working together, results will be analysed to provide information on the full spectrum of FL diagnoses, including newly diagnosed FL patients who cannot take part in the main trial (PETReA). Importantly, PETReA Plus data will also form part of the Follicular Lymphoma Foundation’s Precision Medicine Programme (PMP) registry, a global effort that shares the aims and ambitions of PETReA Plus.
The study is led by Dr Kim Linton, an internationally leading clinician and researcher in FL. She works at The Christie in Manchester, the largest comprehensive cancer centre in Europe with a reputation for delivering excellence in clinical care and research across all cancer types. Investigators running the study at NHS Centres are all leaders in the field, with a track record of successfully delivering this type of study.
PETReA Plus is the only study in the world that is prospectively collecting outcomes of initial management from all people with newly diagnosed FL. Unique results of this study, such as whether outcomes are influenced by the order in which treatments are given and how best to match treatments to certain patient groups, cannot be obtained from current clinical trials. PETReA Plus will therefore address gaps in our knowledge that will be crucial for improving cure rates in FL and providing new knowledge to inform next-generation treatments.
Together, the results of these studies will provide the largest global data repository in FL; this is hugely important in a rare disease like FL where achieving a cure will only be possible if we work together.
The project is being co-funded by Blood Cancer UK and the Joyce and Norman Freed Charitable Trust, who share our belief in the transformational nature of this study.
Still in the conception stage, the Precision Medicine Program is a ground-breaking initiative aiming to mobilize the patient community to fuel a targeted acceleration in FL research and clinical development.
The PMP will leverage real-world data, including biological data to promote new directions in FL research and will drive biopharma and industry drug development. Putting the patient at the center of what we do, we maximize our chances of success in improving the care, and longevity of every affected patient.
The goal of this program will be to improve treatment strategies and to speed up the development of new treatments and ultimately a cure for every FL patient.
The PMP will aim to provide evidence-based aggregate information to doctors and patients which will help them to make personalized treatment decisions. Being able to predict and reduce treatment side effects, will allow patients to make informed decisions that balance both effectiveness and toxicity. Creating a better understanding of the disease will reduce the time it takes for new treatments to be developed.
Delivering the PMP will accelerate finding a cure. The aim is to develop a precision medicine model in which a person’s specific genomics, immune system and microenvironment are considered to determine the optimal treatments for that patient.
Together with our partners, we engaged with clinicians, researchers, life sciences and patients across the globe to identify through consensus the top unmet needs in FL. The key objectives identified for the PMP are:
➤ Understand better the biology of FL (which can vary from patient to patient)
➤ Optimize treatment regimens and sequencing – knowing what FL treatments and in which order will give the best results
➤ Profile and predict treatment toxicity
➤ Develop surrogate endpoints (an indicator used to predict if a treatment works)
➤ Generate real-world data
“My great hope is that I will stay fit and healthy for long enough to allow medical science to crack the code!”
Caitlin Wormer, Follicular lymphoma patient diagnosed in 2018.
We will be keeping you updated on our progress through our community communications, this website and our social channels about when this project will be launching so watch this space.
While the foundation will support grant programs independently and in partnership, we also need to try and harness the larger resources available via government, local agencies and other cancer non-profit organizations.
The FLF is international and will initially look to work in the UK, US, Australia, Israel and Europe to advocate for increased focus on FL at this level, encouraging research and supporting agencies to make these efforts as effective as possible. Read our policy on working with the pharmaceutical industry here.
Visit our scientific publications page, where we share valuable insights and advancements in the field of follicular lymphoma research. Explore the latest findings and scientific contributions that shape our understanding of this type of lymphoma. We invite you to delve into our initial resources as we continue to build a comprehensive library of knowledge.
We’d love to hear from you if you’re interested in learning more about the FLF and our initiatives. We welcome your feedback, support, and collaboration in any way you can.
If you want to find out more about the FLF and any of our research programs, please contact us at info@theflf.org.
