Category: News (Parent Page)

  • Unlock the Cure Gala Dinner Raises Over £800,000

    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.  

    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 Attends ASH Annual Meeting in San Diego   

    The FLF Attends ASH Annual Meeting in San Diego   

    The FLF Attends ASH Annual Meeting in San Diego   

    The Follicular Lymphoma Foundation (FLF) is thrilled to participate in the upcoming American Society of Hematology (ASH) Annual Meeting, a premier event that unites top experts in hematology to share innovative research and medical advancements. This year’s conference in San Diego, US, offers an essential opportunity for the FLF to further our mission of unlocking a cure for follicular lymphoma. 

    Why We’re Attending 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 will play 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 remains focused on ensuring that follicular lymphoma receives 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. 

  • Webinar: Cutting-Edge Treatments for FL: What’s New and What’s Next 

    Webinar: Cutting-Edge Treatments for FL: What’s New and What’s Next 

    Cutting-Edge Treatments for FL: 
    What’s New and What’s Next

    This session which took place on November 25th 2024, brought together leading experts and a patient who has experienced CAR-T therapy to provide a comprehensive look at emerging therapies for FL, including CAR-T, bispecific antibodies, BTK inhibitors, and more. 

    Open to everyone, the webinar was particularly beneficial for patients, families, and caregivers. It catered to those wondering what to look out for if their FL returns, facing the challenges of a relapse, and aiming to empower their patient journey while making tough decisions. 

    Webinar series:  

    This webinar is part of the FLF’s ongoing series, with webinars held every other month. To learn more about our upcoming webinars, click here, and register your interest today to stay informed about these engaging and informative events. 

    Key highlights:

    Gain a deeper understanding of how these innovative treatments are transforming the FL landscape and hear first-hand how they can impact quality of life and prognosis. Our panel of experts also explores the challenges surrounding side effects, accessing these treatments, and the future of personalized medicine in FL care. To learn the basic background about these treatments, please visit our webpage on immunotherapy.   

    Watch full webinar below: 
     

    [Disclaimer: This video is intended for educational and disease awareness purposes only and the information presented and discussed does not constitute medical advice.] 

    About the speakers

    Dr Mitchell Smith – Chief Medical Officer, Follicular Lymphoma Foundation

    Dr Mitchell Smith has an extensive educational background, having earned his Medical Degree and PhD from Case Western Reserve University School of Medicine in Cleveland, OH. He has also completed several residencies and fellowships, including a Fellowship in Medical Oncology at Memorial Sloan-Kettering Cancer Centre in NY. Dr Smith’s career has also spanned many years and institutions, including serving as Director of the Lymphoma Program at Fox Chase Cancer Centre and Director of the Lymphoid Malignancy Program at the Cleveland Clinic.

     

    Dr Jeremy Abramson – Director, Jon and Jo Ann Hagler Center for Lymphoma, Associate Professor of Medicine, Harvard Medical School 

    Dr. Abramson is Director of the Lymphoma Program and the Jon and Jo Ann Hagler Chair in Lymphoma at the Massachusetts General Hospital Cancer Center, and Associate Professor of Medicine at Harvard Medical School.  Dr. Abramson earned his medical degree from the Mount Sinai School of Medicine in New York City and a Masters Degree in Medical Sciences from Harvard Medical School.  He completed a residency in Internal Medicine at the Massachusetts General Hospital in Boston, followed by a fellowship in Hematology and Oncology at the Dana-Farber Cancer Institute. Dr. Abramson’s clinical and research interests are in non-Hodgkin lymphomas, Hodgkin lymphoma, and CLL. His research involves identifying new targets for therapy in lymphomas and lymphoid leukemias, and the design and conduct of clinical trials of new cancer therapies in these diseases. 

     

    Ken Karnes – Patient Advocate

    Ken’s journey with FL began in 2017 after a persistent cough, swollen lymph nodes, and a rash led to a biopsy, confirming the diagnosis. He underwent six months of treatment with Rituxin and Bendamustin, but the FL returned more aggressively within four months. Seeking advanced care, Ken left Connecticut for Boston, where, after another round of treatment failed, he was offered a spot in a CAR-T therapy clinical trial. Although it was a tough decision, Ken underwent CAR-T therapy in July 2019, and it successfully put him into remission. Now cancer-free for five years, with the treatment FDA-approved, Ken shares his story in the hope it can offer some comfort for others who are going through their own journey. 

    newsletter_q3_10012
    Jeremy Abramson Cutting-Edge Treatments for FL
    Ken - Cutting-Edge Treatments for FL

    This webinar series is supported by an educational grant from Genmab US, Inc and AbbVie and sponsorship from BeiGene USA, Inc., Novartis and Kite Gilead. All of the above have had no influence on, control of, nor input into the development or performance of the webinar series. 

  • Exploring the Future of Chemotherapy with Professor Jessica Okosun  

    Exploring the Future of Chemotherapy with Professor Jessica Okosun  

    Exploring the Future of Chemotherapy with Professor Jessica Okosun  

    flf_newsletter8

    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  

    Patient Survey Insights – Exploring FL Patient Experiences with Immunotherapy and Communication Preferences  

    Person Using Laptop

    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. 

    Patient Residence Map

    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.

    Treatment Percentage Chart

    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.

    Clinical trial survey

    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.  

    Informed level gauge

    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.

     

    Popular resource preferences

    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!

    Text Invitation to Share Stories

    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

    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 questionsanonymously 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.

     

     

    Follicular lymphoma November 2024 Webinar
    Follicular lymphoma January 2025 Webinar
    Follicular lymphoma March 2025 Webinar
    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

    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.

    Follicular Lymphoma Pathways for Clinical and Translational Investigations
  • Webinar: Relapsed Follicular Lymphoma – Essential Insights

    Webinar: Relapsed Follicular Lymphoma – Essential Insights

    Relapsed Follicular Lymphoma:
    Essential Insights

    This inspiring session, which took place on Thursday, September 26th, provided the audience with valuable expert discussion and patient perspectives, with the chance to connect with the follicular lymphoma community. 

    Open to everyone, the webinar was particularly beneficial for patients, families, and caregivers. It catered to those wondering what to look out for if their FL returns, facing the challenges of a relapse, and aiming to empower their patient journey while making tough decisions. 

    Webinar series:  

    This webinar is part of the FLF’s ongoing series, with webinars held every other month. To learn more about our upcoming webinars, click here, and register your interest today to stay informed about these engaging and informative events. 

    The expert panel:  

    The webinar featured a distinguished panel of speakers, including Dr. Mitchell Smith, the Chief Medical Officer of FLF, who brought his extensive experience in leading lymphoma programs and treating patients to discuss the management of FL relapses. Dr. Philippe Armand, Chief of the Division of Lymphoma at Dana-Farber Cancer Institute and a renowned Harvard professor, shared his expertise on recognizing relapse and the latest treatment options available. Additionally, Andrew McAslan, diagnosed with follicular lymphoma in 2021 at the age of 25, provided an inspiring perspective by sharing his personal journey through treatment, relapse, and his experience of balancing life on “watch and wait” alongside his family life and competitive sports.  

    Key highlights:  

    • Understanding why relapse happens and exploring treatment options

    • Learning to spot the signs of relapse and the importance of regular monitoring 

    • Discovering the latest therapies available 

    • Hearing from a patient who’s been through it and thrived 

    • Getting your questions answered by world-renowned oncologists 

    Watch full webinar below: 

     

    [Disclaimer: This video is intended for educational and disease awareness purposes only and the information presented and discussed does not constitute medical advice.] 

    Your Questions: 

    We were thrilled by the high level of engagement and the number of insightful questions from our audience. The panel addressed as many popular topics and answered as many questions as possible within the available time. If your anonymous question wasn’t addressed during the webinar, rest assured that we are working to cover these topics and will continue to publish articles to provide further answers. 

    Participate in our patient survey until 7th October 24 

    As Dr Mitchell Smith mentioned, if you are interested to share your experience living with FL, please participate in our short, anonymous survey on treatment preferences. Your input will play a vital role in shaping discussions at the upcoming American Society of Haematology (ASH) conference—the largest event focused on blood cancer research globally. Help to highlight the challenges faced by patients and guide future care improvements. Open until 7th October 2024.  

    👉 Take the survey here   

    If you’re unsure about any of the terms and treatments discussed, please visit our glossary. 

    Your input matters 

    We value your suggestions, feedback, and topic requests for future webinars. If there’s a specific aspect of follicular lymphoma you’d like us to cover, or any other input you’d like to share, please complete this form.   

    We are committed to continuously improving our webinars based on your needs and interests.  

    About the speakers

    Dr Mitchell Smith – Chief Medical Officer, Follicular Lymphoma Foundation

    Dr Mitchell Smith has an extensive educational background, having earned his Medical Degree and PhD from Case Western Reserve University School of Medicine in Cleveland, OH. He has also completed several residencies and fellowships, including a Fellowship in Medical Oncology at Memorial Sloan-Kettering Cancer Centre in NY. Dr Smith’s career has also spanned many years and institutions, including serving as Director of the Lymphoma Program at Fox Chase Cancer Centre and Director of the Lymphoid Malignancy Program at the Cleveland Clinic.

    Dr Philippe Armand, Chief, Division of Lymphoma, Dana-Farber Cancer Institute 

    Philippe Armand obtained his MD and PhD from the University of California San Francisco. He completed a residency in Internal Medicine at Brigham and Women’s Hospital in 2004, and a fellowship in Hematology/Oncology at Dana-Farber Cancer Institute (DFCI) in 2007. Since then, he has worked in the Department of Medical Oncology at DFCI. He is currently a Professor of Medicine at Harvard Medical School, the Harold and Virginia Lash/David Lash Chair in Lymphoma Research, and the Chief of the Division of Lymphoma. His clinical practice is focused on patients with lymphoma. His research interests center on the development of novel therapeutics and assays in lymphoma, with a key focus on the translation of local laboratory research to novel clinical trials.

    Andrew McAslan- Diagnosed with FL in 2021

    In 2021, Andrew was diagnosed with Stage 4 Follicular Lymphoma at only 25 years old. At the time, he was involved in competitive sport training as an 800m track athlete, so the news came as a huge shock and turned his life upside down. He immediately started a course of Bendamustine and Rituximab treatment, which resulted in a complete response and no evidence of disease. Unfortunately, this remission was short-lived, and he relapsed at the end of 2022. Since then, Andrew has been on ‘Watch and Wait,’ with the progression of the disease being closely monitored. It is expected that he will need his next line of treatment in the next 6 months to 1 year.

    Andrew’s experience with follicular lymphoma was initially very treatment and recovery focused, but the majority of his journey has been about life after treatment or living with relapsed follicular lymphoma. For Andrew and his family, this has been an incredibly turbulent period, dealing with the uncertainty of when his condition will decline and when treatment will be required. As someone with a young family, early in his career, and with ambitions of returning to elite sport, this stage of the disease has presented a number of challenges.

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    Dr Philippe Armand,
    Andrew McAslan

    This webinar series is supported by an educational grant from Genmab US, Inc and AbbVie and sponsorship from BeiGene USA, Inc., Novartis and Kite Gilead. All of the above have had no influence on, control of, nor input into the development or performance of the webinar series. 

  • Blood Cancer Awareness Month – you can make a difference

    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.  

    Cancer Awareness Month

    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.