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Category: News (Parent Page)
2024 End of Year Reflections
2024 End of Year Reflections:
Celebrating Progress, Gratitude, and HopeAs 2024 comes to a close, we at the Follicular Lymphoma Foundation (FLF) are filled with pride and gratitude. This year has been transformative, marked by groundbreaking progress in our mission to cure follicular lymphoma.
Your unwavering and generous support has fueled our achievements, and as we reflect on the year, we also look ahead with hope and determination for an even brighter 2025.
Key Achievements in 2024
1. Advancing Research with Patient-centric Focus
We collaborated with leading global companies and top experts to accelerate innovative treatments and advance scientific understanding, ensuring research is strategically coordinated and focused on real patient outcomes.
Patient input—through patient review panels, focus groups and surveys, patients played a critical role in shaping research priorities and driving meaningful discussions.
Major Research Highlights:
- CURE FL Awards
- Cycle 1 continues to make exciting progress, it has successfully completed its second year of research and is now paving the way for clinical trials.
- Cycle 2 launched in partnership with Leukemia & Lymphoma Society (LLS) and the Institute for Follicular Lymphoma Innovation (IFLI) awarding $2.25 million to three pioneering research projects aimed at transforming patient outcomes.
- Biomarker Discovery Program
- In partnership with the Mark Foundation for Cancer Research.
- Launched to address the critical need for biomarkers that can identify high-risk patients, guide treatment decisions, and serve as interim endpoints for evaluating therapies.
- PETReA Plus
- In partnership with Blood Cancer UK and the Joyce and Norman Freed Foundation.
- Funding a world-leading study led by Dr Kim Linton at The Christie Hospital in Manchester, UK. This project, which is part of an ongoing clinical trial, will give us a better understanding of how we can improve patient outcomes.
2. Empowering Patients through Community and Education
Our patient-centric approach empowers individuals with the knowledge they need to navigate their journey with follicular lymphoma. Our priority for patient involvement at every stage, inspired by what they tell us matters most. We ensure everything is co-designed with patients for maximum impact.
Patient Empowerment Highlights:
- Webinars
- A series of five expert-led webinars, collectively attracting thousands of views.
- Patient Surveys
- Gathering insights from patients to ensure our programs address their most pressing needs.
- We have run 3 surveys in the past 12 months, each with up to ~800 patient responses.
- Personal Stories
- Patients highlighted these stories as a highly valuable resource, and we now have 30 stories available to read which have had over 50,000 views.
- Read personal stories
- We’d love to include more stories; you can share your own story here
- Patients highlighted these stories as a highly valuable resource, and we now have 30 stories available to read which have had over 50,000 views.
“Great insight into how treatments continue to progress and so comforting to know others have the same concerns and questions as I have. This makes me feel less alone.”
– Patient Feedback on Relapsed FL Webinar
3. Educating Physicians Through Scientific Events
By fostering collaboration and knowledge-sharing, we empower physicians with the tools and insights needed to improve patient outcomes and enhance quality of life.
Key Events:
- ASH Annual Meeting (San Diego, US)
- Our satellite symposium, in partnership with Clinical Care Options LLC, “A Game Changer for FL,” highlighted the latest breakthroughs in follicular lymphoma research.
- We also convened the CURE FL researchers to discuss ongoing projects, future visions, and the importance of expanded collaboration.
- European Hematology Association (EHA) Conference (Madrid, Spain)
- Meeting with some of the leading European experts in the field.
- Advances in Malignant Lymphoma Conference (Philadelphia, US)
- Pioneering the Future of Immuno-Oncology in the FL Investigator Workshop.
These events foster collaboration among leading researchers and clinicians, driving innovation and improving patient outcomes. These events also provide a vital platform to amplify the patient voice and ensure that FL takes center stage in these important conference discussions.
4. Achieving New Fundraising Milestones
Thanks to the generosity of our supporters, 2024 was a record-breaking year for fundraising. Your contributions have enabled us to invest in cutting-edge research and expand our patient programs.
Fundraising Highlights:
- Unlock the Cure Gala Dinner
- Raised over £800,000 to support critical research and patient services, showcasing the generosity and commitment of our community.
- Global Community Fundraising
- A testament to the power of our global community, with individuals and groups uniting across continents to support our mission through creative events and personal challenges.
- Partnerships & Major Donor Support
- Strengthened collaborations with corporate partners, trusts, and major donors who share our vision for a future free of follicular lymphoma, enabling groundbreaking projects and initiatives.
A Heartfelt Thank You
These achievements would not have been possible without you—our incredible community of patients, caregivers, donors, partners, and advocates. You are the driving force behind our progress.
- To follicular lymphoma patients and caregivers: Your courage and resilience inspire us every day. Your input drives our programs and research.
- To our donors, corporate partners, and fundraisers: Your generosity fuels the research and programs that bring us closer to a cure.
- To our research partners and healthcare professionals: Your tireless commitment to innovation is making a tangible difference in the lives of patients worldwide.
Help Us Start 2025 Strong
While we are proud of all we have achieved in 2024, we know there is still much work to be done.
In 2025, we aim to:
- Expand our research funding to support innovative projects with the potential to transform patient care.
- Enhance our patient programs to provide even more resources, education, and support.
- Raise global awareness about follicular lymphoma, ensuring more patients have access to the care and treatments they need.
As we celebrate the success of 2024 and look ahead to the promising opportunities of 2025, your support is more critical than ever. Together, we can continue driving groundbreaking research and transforming lives.
Join us in starting the year strong—make a donation today and be part of the movement to find a cure for follicular lymphoma.
- CURE FL Awards
Unlock the Cure Gala Dinner Raises Over £800,000
Unlock the Cure Gala Dinner Raises £800,000 for Follicular Lymphoma Research
London, 14th November 2024
On November 14th, the Follicular Lymphoma Foundation (FLF) held its highly anticipated Unlock the Cure Gala Dinner at the luxurious Nobu Hotel in London. This remarkable evening was not just a fundraising event; it was a heartfelt gathering of individuals united by a common goal: to find a cure for follicular lymphoma. The gala successfully raised an impressive £800,000 (approximately $1 million), with all proceeds dedicated to pioneering research and educational efforts.
The evening’s achievements were made possible thanks to the generous support of our Key Presenting Sponsor, dmg Media, along with contributions from Diageo, Universal Music, News UK & Ireland, The&Partners, LetterOne, and Coolr. Their commitment to our cause helped create an unforgettable experience for all attendees.
Andrew’s speech about life with an incurable cancer
A particularly moving moment came when Andrew McAslan shared his personal journey living with follicular lymphoma. His story resonated deeply with everyone present, serving as a poignant reminder of why our mission is so vital. Andrew’s courage and optimism highlighted the need for continued research and support for those affected by this currently incurable cancer.
You can view his full speech below and explore his patient story here.
Highlights of the evening
From the moment guests arrived, it was clear that this night was about more than just fundraising; it was a celebration of resilience and hope. Hosted by the gracious Tania Bryer OBE, the evening featured inspiring stories and heartfelt connections that underscored the importance of community.
Guests enjoyed signature cocktails crafted by Diageo and indulged in Nobu’s exquisite cuisine, creating a warm and inviting atmosphere.
The night reached a thrilling peak with a surprise performance from the incredible Beverley Knight. Her powerful voice filled the room and got everyone out of their seats, adding to the uplifting energy of the evening.
Thank you for making this possible
As we reflect on this successful gala, we extend our heartfelt gratitude to every attendee, donor, and partner who contributed to this Unlock the Cure Gala Dinner. The funds raised will directly support innovative research aimed at improving patient outcomes and ultimately finding a cure for follicular lymphoma.
Looking ahead, we are excited to announce plans for the next Unlock the Cure Gala in 2025. If you would like to be part of this meaningful event, please reach out to us at info@theflf.org. Together, we can continue making a significant difference for patients and families facing follicular lymphoma.
Immunogenicity of COVID-19 vaccines in patients with follicular lymphoma receiving frontline chemo-immunotherapy.
Immunogenicity of COVID-19 vaccines in patients with follicular lymphoma receiving frontline chemo-immunotherapy.
Plain English summary of the Publication
What was the purpose of the work?
To understand how patients with follicular lymphoma (FL) respond to the COVID-19 vaccine and determine whether the response is altered by the timing of the vaccination (administered before, during, or after treatment), the treatment received, or the stage of the patient’s lymphoma.
Why is this work relevant to me as a person with FL?
The NHS will offer patients with FL COVID-19 vaccination in the autumn vaccination programme. People with FL will need to decide whether to take up the offer. Uptake rates of vaccination by patients with blood cancer have reduced over time. Studies have reported that the vaccination is less effective in cancer patients, particularly those with blood cancer. The following summary information gained from the research may help a person with FL make an informed choice about vaccination.
What you may need to know before reading this information.
When a person is given a vaccine, their immune system responds by activating two key types of cells: B cells and T cells. B cells produce antibodies; some become memory B cells, which remain in the body and can produce antibodies if the person is exposed to the virus again. T cells include Helper T cells, which assist in activating B cells and other immune cells; cytotoxic T cells, which directly attack and destroy infected cells; and memory T cells with a similar role to the memory B cells.
B and T cells together ensure a robust and agile immune response, offering immediate and long-lasting protection.
What did the researchers do?
The researchers examined how COVID-19 vaccines worked in 58 patients with FL participating in a national clinical trial called the PETREa study. All patients were receiving treatment for FL for the first time. Treatments included rituximab (which reduces B cells), bendamustine (which reduces CD4+ T cells, a Helper T cell), and chemotherapy. Patients received COVID-19 vaccines at different times: before, during, or after cancer treatment. Blood samples were taken for analysis after the first and second vaccinations. The vaccines used were either Pfizer or AstraZeneca.
What does this research show?
The antibody response to the COVID-19 vaccination in FL patients was weaker compared to ‘healthy’ people. A T cell response to the vaccine was present and provided an immune response.
* This means the immune response seen from B cells (production of antibodies) to the vaccine is present in FL patients receiving the vaccination but is weaker than the antibody response seen in people without FL. However, FL patients have an immune response provided through a T-cell reaction, and, therefore, have some immunity.
Treatments that reduce B cells, such as rituximab, reduce the antibody response to a COVID-19 vaccine.
* This means that patients with FL who receive rituximab treatment have a weaker antibody response and produce fewer antibodies to the vaccination because they have fewer B cells to generate that type of immune response.
Bendamustine, a treatment that depletes CD4+ T cells (Helper T cell), did not reduce T-cell responses, possibly due to its lesser effect on CD8+ T cells (role in immune surveillance).
* This means that treatment with bendamustine does not change the T cell response to the vaccination in FL patients.
High disease severity (more advanced disease is present in a patient) and low levels of Immunoglobulin IgA contribute to lower antibody responses.
* This means FL patients who have more disease present when being treated for the first time and a lower Immunoglobulin A level have a lower antibody response to the vaccination.
When the 2nd vaccine dose was given during or shortly after treatment for lymphoma, lower antibody responses were seen.
* This means it is likely that the generation of antibodies is affected by treatment and patients may benefit from vaccination before rather than near or at the time of treatment.
What is the important take-home message for me, a person with FL?
The study reports that FL patients may have a weaker antibody response to the COVID-19 vaccine, but T-cell responses remain strong and provide some immunity to COVID-19. The study supports the effectiveness of the COVID-19 vaccine in FL patients despite the challenges posed by their disease and treatments.
This summary information is provided for you to consider and discuss with your clinician.
Malcolm Rhodes (patient advocate), Kate Robinson (patient advocate), and Tania Seale (UoM PDRA) produced and reviewed the summary.
To review the full article please see the British Journal of Haematology DOI: 10.1111/bjh.19562
The FLF at the ASH Annual Meeting in San Diego
The FLF at the ASH Annual Meeting in San Diego
Updated: 17th December 2024
The Follicular Lymphoma Foundation (FLF) was thrilled to participate in the recent American Society of Hematology (ASH) Annual Meeting, a premier event uniting top experts in hematology to share innovative research and medical advancements. This year’s conference in San Diego, US, offered an essential opportunity for the FLF to further our mission of unlocking a cure for follicular lymphoma.
Here are 3 key updates from ASH 2024, curated by our CMO, Dr. Mitchell Smith:
- As ongoing follow-up continues for trials of CAR-T and bispecific antibody-based therapies for relapsed and refractory FL, results continue to be very promising. Many patients have now gone several years in continuing remission.
- The randomized inMIND study of treating patients with relapsed or refractory FL with lenalidomide-rituximab (referred to as R2), addition of the anti-CD19 monoclonal antibody tafasitamab, prolonged progression-free survival while not increasing significant toxicity. This could change practice when R2 is a recommended treatment.
- We are proud to see presentations from the labs of investigators supported by our CURE-FL program, Drs. Beguilin, Brody and Perez-Galan, that clearly have potential impact for clinical trials and treatments of FL.
We’re preparing a detailed summary of these advancements and what they mean for the future of FL treatment, which we’ll share with you soon.
Why We Attend ASH
Our presence at ASH reflects our unwavering dedication to ensuring patients remain central to conversations about follicular lymphoma. By engaging directly with scientists, researchers, and pharmaceutical leaders, we work to prioritize follicular lymphoma on the global research agenda. Our aim is to emphasize the urgency of developing more effective, patient-focused treatments while advancing the search for a cure.
Through collaboration and partnerships, the FLF amplifies the voices of those living with follicular lymphoma. We are committed to ensuring their needs not only shape the conversation but also drive innovation in research and treatment.
Championing Patient-Centered Research
Patient-centered research is the cornerstone of our participation in ASH. We believe breakthroughs in treatment must be informed by the needs of those affected, and we actively collaborate with leading researchers and clinicians to integrate patient perspectives into the research process.
Insights from our patient surveys played a pivotal role in shaping our contributions at ASH, highlighting the challenges patients face and guiding improvements in care for both researchers and healthcare providers.
Accelerating Innovation Through Collaboration
ASH offers a unique platform for the FLF to connect with the global scientific community, identify breakthrough research, and accelerate the development of innovative treatments. Through in-depth discussions, we aim to strengthen existing partnerships and forge new collaborations that support critical initiatives like our Biomarker Discovery Program and CURE FL Awards. These efforts are vital for expediting new treatments and improving outcomes for patients.
Driving the Future of Follicular Lymphoma Research
At ASH, the FLF remained focused on ensuring that follicular lymphoma received the attention it deserves. The insights and partnerships gained during the conference will play a crucial role in shaping the future of research, bringing us closer to achieving our ultimate goal: a cure for follicular lymphoma.
Support our mission
Help us drive life-changing research for follicular lymphoma patients. Your donation directly supports our efforts to advance innovative treatments and bring us closer to a cure.
Exploring the Future of Chemotherapy with Professor Jessica Okosun
Exploring the Future of Chemotherapy with Professor Jessica Okosun
Jessica answers your questions!
As follicular lymphoma (FL) treatment evolves, a key question arises: Do we still need chemotherapy to treat FL? As part of our webinar series, Professor Jessica Okosun, FLF Scientific Advisor, addresses this and other crucial questions, including emerging chemo-free options.
“How can we continue to advance the field forward? As new immune-based and targeted treatment options are being developed and several now approved, we’re starting to think about whether we need chemotherapy at all? So, we are seeing clinical trials now where we’re looking at what they call chemo-free options.”
With new clinical trials and evolving research, there is a growing conversation around what the industry calls chemo-free options for follicular lymphoma patients. This refers to treatments that do not involve traditional chemotherapy, which typically uses drugs to kill the rapidly dividing cancer cells. Even though many chemo regimens for FL are considered “mild”, they certainly have side effects. These alternatives aim to treat FL without the commonly associated side effects such as fatigue, nausea, risk of infection and hair loss.
Explore more on FL clinical trials in our webinar, where Professor Jessica Okosun joined Dr. Mitchell Smith, FLF Chief Medical Officer, alongside two inspiring individuals living with FL, who shared their personal experiences on clinical trials.
Jessica takes the time to answer some of your most burning questions about where FL treatment is heading.
Q: Will chemotherapy still be a part of treatment in the future?
A: We have to remember that chemotherapy has been the backbone of treatment in many lymphomas including follicular lymphoma, together with monoclonal antibodies like rituximab for a few decades because they are very effective for targeting and removing the cancer cells. However, chemotherapy can affect both cancer cells and normal cells and as a result, this leads to some recognized side effects and long-term risks. This has raised the question about whether there are alternative treatments that could be just as effective (or better) and safer with less side effects and risks commonly associated with chemotherapy. Until we find that alternative, chemotherapy will likely remain an important treatment for patients with follicular lymphoma, particularly as a first treatment.
Q: Are there any chemo-free options presently?
A: Depending on the geographical region of patients, there are a number of chemo-free options, the majority being available when patient’s lymphomas have returned (relapsed). One such combination treatment is rituximab together with lenalidomide, a drug that can target the environment that surrounds the cancer (the microenvironment). The microenvironment in follicular lymphoma is recognized to be important for sustaining the growth of the lymphoma and so it is certainly desirable to be able to have treatments that targets this. The chemo-free combination of rituximab and lenalidomide was compared to rituximab plus chemotherapy in a large clinical trial called RELEVANCE. This trial showed us that rituximab and lenalidomide was just as effective as rituximab plus chemotherapy and was associated with less infections and neutropenia (low blood count). However, there are still side effects related to chemo-free treatments like rituximab and lenalidomide, so whilst they are chemo-free, one must bear in mind that they are not side effects-free.
Q: Given the effectiveness of bispecific antibodies in later lines of treatment, would we expect that they will eventually be considered as 1st line treatment?
A: It is a good question. There are very promising results showing that patients with relapsed follicular lymphoma really benefit from bispecific antibodies. Bispecific antibodies are a new generation of treatment that act like a lock and key, one arm grabs the cancer cell and the other grabs the immune cells bringing it closer to the cancer to help attack and eliminate them. Due to this, there are now several clinical trials in follicular lymphoma patients that are investigating how bispecific antibodies in 1st line together with chemotherapy or chemo-free drugs like lenalidomide compares to the conventional treatment. If the results of these trials demonstrate that the bispecific antibody combination is better and safe, then this might change the face of 1st line treatment for follicular lymphoma patients in the future.
Professor Okosun also emphasizes the importance of clinical trials in pushing forward progress for FL patients:
“Trials for follicular lymphoma are important for every aspect of a patient’s journey—whether it’s treatment in the frontline, or in the relapse setting where there is no standard of care. This can sometimes be challenging because there’s no real consensus on how to treat patients when FL relapses.”
This ongoing research is crucial, particularly in the relapsed setting where more effective treatments are urgently needed. Watch our webinar on relapsed follicular lymphoma which featured leading experts, who explored the latest treatment advances, along with a patient speaker sharing their empowering journey and insights on managing this challenging stage of the disease.
Read more on our webinar series, including topics such as Cutting-Edge Treatments for FL: What’s New and What’s Next and FL and You: Emotional Health and Wellbeing.
Stay tuned for more Q&A sessions with leading experts in FL research!
To keep updated with news and upcoming webinars, sign up for our regular newsletter here and follow us on social media.
Conclusion
Visit Your Support Hub to access the help and resources you need and start living well with follicular lymphoma today.
Disclaimer: The information provided in this blog post is for educational purposes only and should not be considered a substitute for professional medical advice. Always consult with your healthcare provider for personalised guidance and treatment options.
Patient Survey Insights – Exploring FL Patient Experiences with Immunotherapy and Communication Preferences
Patient Survey Insights – Exploring FL Patient Experiences with Immunotherapy and Communication Preferences
In June 2024, we conducted an online, global survey on immunotherapy to better understand the experiences and perspectives of follicular lymphoma (FL) patients. With responses from 791 patients across 49 countries, the insights provide a valuable glimpse into the priorities and concerns of the FL community.
Your input is crucial in shaping the future of immunotherapy research and FL care; thank you to everyone who participated in the survey. Below, we dive into some key findings and explore what they mean for patients.
Who participated in the survey?
The survey reached a broad audience, with the majority of respondents residing in the USA (35%), the UK (23%), and Spain (15%). In total, 49 countries were represented, spanning various regions across Europe, North and South America, Australia, Asia, and Africa.
Treatment history and clinical trials
One of the most revealing aspects of the survey was the variety of treatments that patients have undergone. The majority of respondents (about 60%) had received chemotherapy, with or without Rituximab or Obinutuzumab, highlighting the continued reliance on these treatments. Newer treatments like CAR-T therapy and bispecific antibodies were less common, with only 1.6% and 2.9% of patients, respectively, having received them. Around 16% of patients had not yet started treatment.
For many, the newer therapies are often explored through clinical trials. The data showed that only 9% of respondents had participated in clinical trials, which varied greatly by region, with the USA having the highest involvement.
If you’re considering joining a clinical trial, we recommend watching our webinar on FL clinical trials which offers a deeper understanding of clinical trials from experts and patients, to empower and enhance the patient journey.
Immunotherapy awareness and information needs
When it comes to newer treatments like CAR-T therapy and bispecific antibodies, many patients reported they feel underinformed. On a scale of 1 to 5, the average awareness level was just 2.16, which was relatively consistent across geographical regions. This indicates a significant need for more accessible information.
People expressed the most valuable treatment information they would like to have would be on the risks and side effects of the treatments, their effectiveness and the treatment process. People were also interested in who can receive them, where they are available and available clinical trials.
Perceived barriers to accessing immunotherapy
Understanding the reality of accessing immunotherapies like CAR-T and bispecific antibodies can be complex. The survey identified several perceived barriers, with high treatment costs topping the list. This was most prominent in the USA, UK and Spain, where healthcare systems and insurance coverage vary widely. Other common perceived challenges included the availability of these treatments in local areas and individual suitability.
At the FLF we prioritize integrating these patient perspectives into research studies and sharing these insights with researchers. Our goal is to address patient concerns and improve future treatments, by ensuring that our programs reflect the real experiences and needs of patients.
The FLF’s CURE FL Awards program funds innovative research that targets challenges in CAR-T and bispecific antibodies, with the potential to significantly contribute to finding a cure for FL. We meet with the researchers periodically to discuss patient survey results and how they feed into the ongoing research programs. Additionally, we collaborate with medical education organizations to ensure that healthcare providers receive real and up-to-date information on patient perspectives, which can be incorporated into both practice and research.
For a deeper dive into some of the challenges, read our article, which explores the need for more cost-effective manufacturing processes to enhance accessibility and equity in cutting-edge therapies.
What do patients prioritize in treatment?
When considering treatment options, most patients prioritize treatment effectiveness whilst monitoring side effects. In fact, many patients prioritize effectiveness even if it means dealing with side effects. Other important factors include the treatment’s impact on overall well-being, as well as the duration and frequency of the therapy.
Factors such as the method of administration and a patient’s previous treatment history—like prior side effects and the number of previous treatments—were less of a concern. This insight is invaluable for researchers as they work on advancing FL therapies, ensuring that patient priorities are at the forefront of new developments.
For more resources and information on living with FL and understanding various treatment options, visit Your Support Hub on our website.
When do patients seek information on treatment options?
The survey found that most patients seek information at two key moments in their FL journey: at the time of diagnosis and before beginning a new treatment. Many patients also look for information during a recurrence or when experiencing side effects, underscoring the importance of providing reliable information during these critical times.
Enhancing the FLF’s resources
In the survey, many respondents shared valuable feedback on how we can enhance the information provided on the website. There was a strong desire for updates on recent research developments and treatments, comprehensive explanations about treatments, and more references to scientific research.
We are continuously working to enhance our communications and provide the latest research developments on our website, and we are delighted to know that it meets the needs and expectations of the FL community.
Popular resources
Educational videos featuring healthcare professionals, patient testimonials and stories, scientific articles and frequently asked questions from patients proved the most popular among the survey respondents.
Our ongoing webinar series offers expert insights from experienced healthcare professionals, along with patient perspectives on a variety of topics. Click here to view the webinar recordings, and stay tuned for upcoming webinars.
The power of patient stories
We love to hear the positive impact patient stories have on the FL community; These personal accounts were highlighted as one of the most valuable resources for patients, offering practical advice, inspiration and hope, read them here. Sharing your story can make a significant difference in someone else’s journey, helping to build a supportive and informed FL community.
We invite you to contribute to this collective voice by sharing your own experiences with FL. Whether it’s about your treatment journey, overcoming challenges, or the day-to-day realities of living with FL, your story can provide invaluable insights to others. Click here to learn more!
Conclusion
The survey results underscore the diverse experiences and needs within the FL patient community. By understanding these insights, we can help shape research to meet patient priorities. Your voice is vital in shaping the future of FL care and we sincerely thank everyone who participated in the survey.
We remain committed to enhancing our resources, ensuring that every patient has access to the information and support they need. As a community, we can work together to navigate the challenges of FL and stay informed about the latest research.
To keep updated on future opportunities to have your say sign up for our regular newsletter here and follow our social media.
Thank you to the FLF super supporter patient group for co-creating the survey with the FLF. Thank you to Jassen, Genmab & Abbvie for supporting this independent program. Funders had no input into the survey design or questions.
Visit Your Support Hub to access the help and resources you need and start living well with follicular lymphoma today.
Disclaimer: The information provided in this blog post is for educational purposes only and should not be considered a substitute for professional medical advice. Always consult with your healthcare provider for personalised guidance and treatment options.
Our Webinar Series – Register Your Interest
Future Webinars – Register Your Interest Today!
We’re excited to announce the continuation of our FLF Webinar Series, offering expert insights and real-life patient perspectives on follicular lymphoma (FL). Whether you’re newly diagnosed, supporting a loved one, or navigating treatment options, these webinars provide a wealth of information for anyone affected by FL.
Don’t miss out—register your interest now to stay updated on these engaging and informative sessions.
Why attend?
➢ Hot topics: Deepen your understanding of FL with discussions on the latest treatments, emotional wellbeing, and other critical aspects of living with FL.
➢ Interactive sessions: Connect with speakers and others in the FL community for a truly engaging experience.
➢ Have your say: Submit your questions – anonymously if you prefer- and hear them answered by world-renowned oncologists and those with lived experience of FL.
➢ Completely free: Participation is free and open to everyone – Patients, families, caregivers and healthcare professionals.
Upcoming webinars
November 2024 – Cutting-Edge Treatments for FL: What’s New and What’s Next
Explore the latest advancements in FL treatments with leading experts and patient experiences. This webinar will cover innovative therapies and cutting-edge research. Be inspired by others on their treatment journey.
January 2025 – FL and You: Emotional Health and Wellbeing
Join us for a discussion on the emotional and psychological aspects of living with FL. Learn strategies to support your mental health and wellbeing from both professionals and patients who understand the journey.
March 2025 – A topic of your choice!
We want to hear from you! We’ll gather your input to choose the most popular topic for the session. Tell us what topics you are interested in by completing this short survey here.
Join us
Our webinars are free, interactive, and designed to empower everyone affected by FL. Register today to secure your spot and stay informed on these important discussions.
Not sure how to join our webinars? For the best attendee experience, please read our Zoom Webinar Guidelines.
By registering your interest, you are consenting to your data being used for FLF programs. For information about how FLF look after your data, please visit our website: www.theflf.org/privacy-policy
Mid-Year Update on Follicular Lymphoma Pathways for Clinical and Translational Investigations
Mid-Year Update on Follicular Lymphoma Pathways for Clinical and Translational Investigations
Published: September 2024
The Follicular Lymphoma Foundation (FLF) is committed to advancing research and clinical applications that improve patient outcomes and treatment approaches for follicular lymphoma (FL). In line with this mission, we are pleased to announce the publication of our latest update, “Follicular Lymphoma: Mid-year Update on Pathways for Clinical and Translational Investigations.”
This publication synthesizes the latest research findings and discussions from recent major lymphoma conferences, including the Advances in Malignant Lymphoma International Conference, the American Society of Clinical Oncology (ASCO), and the European Hematology Association (EHA).
Key Highlights of the Mid-year Update
- Clinical Advancements:
The update provides a detailed analysis of the ongoing development of more effective and less toxic therapies for FL. A particular focus is given to the progress in targeted treatments tailored to individual patients, supported by the validation of predictive biomarkers.
- Breakthroughs in Basic Science:
The publication reviews recent advancements in molecular tools that have significantly enhanced the understanding of FL and its tumor microenvironment (TME). These tools offer the potential for the development of personalized therapies and preventive strategies.
The report highlights how emerging techniques, such as spatial multi-omics, are beginning to identify drivers and markers of high-risk FL, paving the way for targeted treatments for patients with the most challenging clinical scenarios.
- Clonal Progenitor Cells (CPCs) and Experimental Models:
The update also addresses the role of clonal progenitor cells in FL relapse and the development of new experimental models that are expected to drive innovative drug therapies. These models represent a critical advancement in the research landscape, offering new avenues for understanding and treating FL.
- Immune System Engaging Therapies:
A overview is provided on the progress of immune-based therapies, including CAR-T cells and bispecific T-cell engagers (BiTEs). The publication discusses recent data on these therapies, their potential for earlier lines of treatment, and ongoing efforts to enhance their efficacy through rational combination approaches.
- Ongoing and Future Research:
The FLF continues to support and fund groundbreaking research aimed at improving CAR-T therapy outcomes, exploring novel drug targets, and deepening the molecular understanding of FL.
Conclusion
Recent developments in FL research, as presented at major conferences, highlight the substantial progress being made in both understanding and treating the disease. The pace of advancement in this field is accelerating, and the FLF remains dedicated to facilitating and supporting this progress. We look forward to further significant updates, particularly at the upcoming American Society of Hematology (ASH) meeting in December.
Blood Cancer Awareness Month – you can make a difference
You can make a difference this Blood Cancer Awareness Month
Blood Cancer Awareness Month offers a vital opportunity to highlight blood cancers like leukemia, lymphoma, and myeloma. Despite the devastating impact these diseases have on millions of lives globally, blood cancers often don’t receive the attention and funding they deserve. This September, during Blood Cancer Awareness Month, we stand with those affected by blood cancer and commit to driving change through awareness, education, and the urgent push for increased funding and research.
At the Follicular Lymphoma Foundation, our focus is on follicular lymphoma, a blood cancer that is not yet curable, underscoring the critical need for further funding and ongoing research.
Blood Cancer Awareness Month: Why it matters
Every three minutes, one person in the U.S is diagnosed with a blood cancer ¹. That means that approximately 178,520 people will be diagnosed with blood cancer this year in the U.S alone.
Blood Cancer Awareness Month plays a crucial role in educating the public about the various forms of blood cancer, including follicular lymphoma. This month-long campaign emphasizes the significance of early detection, the importance of timely and accurate diagnoses, and the necessity of cutting-edge research to discover more effective treatments.
Dr. Mitchell Smith, Chief Medical Officer of the FLF said:
“Blood Cancer Awareness Month highlights the need to support those affected, empower individuals to take action, and fuel the research that will continue to improve treatments. Together, we can turn awareness into lifesaving change.”
But awareness is only the first step. To truly make a difference, we need your help. Here’s how you can get involved:
How you can help
1. Share your story
Your experience is more than just a story – it’s a lifeline. By sharing your experience with follicular lymphoma, you’re providing hope and inspiration to others and a collective voice that can drive change. Share your story here and help build a supportive community for those affected by blood cancer.
2. Donate to research
Every dollar you donate brings us one step closer to a cure. Your contributions fund essential research, drive the development of new treatments, and support patient education programs. This Blood Cancer Awareness Month, your donation could be the key to saving lives. Donate now and be part of the solution.
3. Engage on social media
Your voice on social media is powerful. By liking, sharing, and commenting on our posts, you expand our reach and strengthen our efforts. Increased visibility not only raises awareness but also attracts partners and sponsors, essential for advancing our cause. Connect to our social channels here.
4. Host a fundraiser
Fundraisers are more than just events – they are powerful tools for change. Whether you host a virtual event, run a marathon, or organize a bake sale, your efforts raise critical funds and spread awareness about follicular lymphoma. Start planning your event, and we’ll be with you every step of the way.
5. Stay informed
Knowledge is power. By staying informed, you can continue to contribute to our shared mission of finding a cure for follicular lymphoma. Subscribe to our newsletter for updates on research, events, and other ways to get involved. Sign up here and stay connected to the cause.
Useful links:
What is follicular lymphoma? – What Is Follicular Lymphoma — Follicular Lymphoma Foundation (theflf.org)
Getting a follicular lymphoma diagnosis – Diagnosis & Signs of FL – Follicular Lymphoma Foundation (theflf.org)
Learn about treatment options – FL Treatment – The Follicular Lymphoma Foundation (theflf.org)
Anne and Stewart’s fundraising story
Anne and Stewart’s fundraising story
Fundraisers, Anne and Stewart recently completed an incredible 432-mile cycling journey through the breath taking landscapes of Scotland. Starting from the historic Gretna Green in the south and ending at the iconic John O’ Groats in the northeast, their eight-day adventure took them through some of the most stunning scenery the Scottish Highlands have to offer.
Along the way, they met many kind-hearted people who were eager to support their mission. Thanks to the generosity of these new friends and the unwavering support of their loved ones, Anne and Stewart not only met but surpassed their fundraising goal.
Originally aiming to raise £500, they were thrilled to bring in a total of over £2,000 for follicular lymphoma research.Their motivation for this remarkable challenge was deeply personal. Anne and Stewart’s nephew, Andrew, is living with follicular lymphoma (FL). For them, this fundraising effort is not just a noble cause—it’s a mission that hits close to home.
Despite the challenges of his diagnosis, Andrew has been a beacon of hope and resilience. A young, fit husband and new father, he has devoted his energy to raising awareness and funds for the Follicular Lymphoma Foundation (FLF). His determination and the support of his friends have already made a significant impact, inspiring Anne and Stewart to take on their own fundraising journey.
As their photos show, Anne and Stewart fully embraced the natural beauty of Scotland as they cycled through rolling hills, rugged coastlines, and serene countryside. Their journey was not just a physical challenge but a testament to their dedication and love for Andrew and everyone affected by follicular lymphoma.
At the FLF, we are deeply moved by Anne and Stewart’s remarkable achievement. Their success brings us closer to our goal of finding a cure for FL and strengthens our community of support. On behalf of everyone at the FLF, and the countless lives that will be touched by their efforts, we extend our heartfelt thanks.
Anne and Stewart’s nephew, Andrew, is living with follicular lymphoma. For them, this fundraising effort is not just a noble cause—it’s a mission that hits close to home.To learn more about how you can fundraise for the FLF and read other inspiring fundraising stories, please click here.
