The Follicular Lymphoma Foundation -
who we are.

About FLF

Nobody deserves to live with an incurable cancer. The Follicular Lymphoma Foundation (FLF) plans to change that. We are the first charity dedicated to finding a cure for FL – and fast.

And with your help, we will CURE Follicular Lymphoma.

Follicular Lymphoma (FL) is a type of blood cancer affecting hundreds of thousands of people across the world. Follicular Lymphoma is the 2nd most common Non-Hodgkin Lymphoma, yet despite its prevalence, most people have never heard of it. This means it’s not getting the attention or the funding it deserves.

Follicular lymphoma isn’t like most other cancers. For most people, FL isn’t an aggressive disease. Instead, people with it will go through periods of active disease, followed by remissions. Living with Follicular Lymphoma causes a range of physical and emotional challenges, as well as living with the uncertainty of not knowing when and how the cancer will return.

And around a fifth of people with Follicular Lymphoma will develop an acute form of the disease which can be highly resistant to treatment and have a poor outcome for patients

Follicular Lymphoma is currently incurable, but we are committed to changing that – for patients living with FL now and for those who will be diagnosed in the future. With your help, a cure is just around the corner.

Our mission

To find a cure and find it fast

Follicular Lymphoma is far from a new disease. But although first diagnosed almost a century ago in 1925, progress in the treatment of Follicular Lymphoma has been frustratingly slow. Too slow for people living with this condition. We’re not prepared to wait any longer.

Research and science have progressed rapidly – survival rates for some cancers have increased dramatically. Yet Follicular Lymphoma receives comparatively little funding and little attention – unless you know someone with FL you are unlikely to have heard of it. Nobody should live with an incurable cancer – when we can change that.

From the discovery of monoclonal antibodies nearly 50 years ago, it took until 1997 for approval of the first therapeutic monoclonal antibody Rituximab – which has had a real, significant impact on extending the lives of people living with Follicular Lymphoma. But it’s not enough. We went another 20 years with some advances, a few new drugs proving successful in extending the length of remission from the disease, while the overall impact on survival rates has been negligible. We say this isn’t good enough. People living with Follicular Lymphoma deserve greater certainty in their future, and we can only achieve this by finding a cure.

Now there is great excitement about new types of treatments approved since 2020: these include CART cells, antibodies that activate the immune system and molecularly targeted drugs. We need to keep up the momentum, and it takes time, effort and funding to accelerate the pace of discovery and to focus these advances on FL.

The Follicular Lymphoma Foundation is the only lymphoma charity dedicated to this specific type of Non-Hodgkin Lymphoma. With the right resources and the right people in our corner, plus the best and most advanced research programmes, we will find a cure – and fast.

Our aim is that by the 100th anniversary of the first diagnosis of FL we will be on the path to a cure – better and less toxic and debilitating treatments, as well as improving the personal journey of every patient.

But we can’t achieve this dream alone. We need your help and we need it now. Find out about more ways in which you can support within our fundraising section. With your support we can transform the lives of people living with Follicular Lymphoma, now and in the future. Together we can find a cure.

“My uncle was diagnosed with Follicular Lymphoma 9 years ago and I felt it would be a great opportunity to support a charity that directly focuses on his cancer.   ”

Emily Watson

Our history

We know better than anyone what it’s like to live with Follicular Lymphoma. We understand the fear, the challenges, and the uncertainty an FL diagnosis and ongoing treatments bring. That’s because the Follicular Lymphoma Foundation was launched in the summer of 2019 by our founder, Nicola Mendelsohn, who was diagnosed with FL in November 2016.

At the time, despite being the second most common Non-Hodgkin Lymphoma, there was very little information available about Follicular Lymphoma. During her search to understand her condition better, Nicola connected with the ‘Living with Follicular Lymphoma’ Facebook group. Here she had the opportunity to be part of a community of others who 

shared her journey, and who shared their own insight, advice and support. The group has over 8000 members globally – a close-knit on-line community of people going through the same journeys.

Over time, Nicola became more involved in the stories and experiences of the individuals in the group as well as her own treatment. This led her to develop relationships with leading clinicians and investigators in the field, who convinced her that by raising awareness and funds, so much more could be done to transform the lives of FL patients and find a cure.

Driven by her passion to make a difference to people living with Follicular Lymphoma and find a cure for this disease, the Follicular Lymphoma Foundation was established in the summer of 2019.

Our FLF communities

At the Follicular Lymphoma Foundation (FLF), the people living with FL are at the heart of everything that we do. Whether you or someone you know has been diagnosed with Follicular Lymphoma, it can feel like a very daunting and uncertain time. We understand that you’ll have questions. Our pages are packed with useful information that can support you and your loved ones at every stage of your FL journey. From understanding your diagnosis and the available treatments, to living well during periods of remission, we are committed to bringing you information that you need to feel informed, reassured and supported.

We’ll also be bringing you news of the latest Follicular Lymphoma research and therapies to emerge from clinical studies around the world in our race to develop better treatments and find a cure for FL once and for all. If you would like to connect, there are a number of ways to do this. You can sign up for our regular newsletter for the latest FLF or FL related news, follow-us through our social channels or alternatively, if you wish to contact us directly please send us an email or send us note within our online enquiry form – the team would be delighted to hear from you.

We work closer with a number of communities outside of FLF and can recommend connected with the biggest global online FL community Living with Follicular Lymphoma, on Facebook. This private and independent group is full of valuable resources and a safe digital space where you can connect with others going through similar experiences.

Follicular Lymphoma Foundation

Trustees

Nicola Mendelsohn is the VP Global Business Group at Facebook.

She also serves on The Mayor of London’s Business Advisory Board, The UK government’s Industrial Strategy Council and is a non-executive director of Diageo. She and her husband are also co-presidents of the charity Norwood.

In 2015 she was awarded a Commander of the British Empire (CBE) for services to the creative industries in the UK.

Prior to joining Facebook Nicola worked in advertising for over 20 years,

Previous roles include: Industry Chair of the UK Creative Industries Council. First female President of the IPA, Trustee of The White Ribbon Alliance, Chairman of Women’s Aid Development Board and President of WACL. She was also a Director of the Women’s Prize for Fiction.

Her greatest joy in life comes from her husband Jon and their four children Gabi, Danny, Sam and Zac.

Serves on the House of Lords International Relations and Defence Committee in the UK Parliament. He was formerly a Shadow Minister of Business, International Trade and Science and Innovation. He is Chairman Designate of 888 Holdings Plc and a Senior Adviser to Value Retail Plc

Richard is a Member of the House of Lords, minister of State (Minister of Refugees), and was the Member of Parliament for Watford from 2010-19, serving as a Minister in the Home Office, Department for Work & Pensions and the Department for Business, Energy & Industrial Strategy.

Prior to entering politics, Richard spent 25 years in business in the hotel and real estate industries, specialising in large-scale property development and the sale and management of hotels. He has extensive trans-Atlantic boardroom experience.

Richard is the trustee of several charities, as well as a patron of Peace Hospice Care and a former Fundraising Chairman of the Variety Club Children’s Society.

Andrea Wong serves on the boards of Liberty Media Corporation, Qurate Retail Group, Hudson’s Bay Company, Hudson Pacific Properties and Social Capital Hedosophia Holdings. She is also a Governor of the British Film Institute and a Trustee of the Royal Academy of Arts.

She was most recently President, International Production for Sony Pictures Television and President, International for Sony Pictures Entertainment based in London.

Previously, Wong served as President and CEO of Lifetime Networks. Prior to that, she was Executive Vice President of Alternative Programming, Specials and Late Night at ABC.

Wong graduated MIT with a degree in electrical engineering and received an MBA from Stanford University. She is also a Henry Crown Fellow at the Aspen Institute and a member of the Committee of 100.

Mike was CEO at the Association of the British Pharmaceutical Industry (ABPI) from 2016-19, representing the industry with Government, and at Select Committees, and in broadcast media. He had previously had a twenty-year career with GlaxoSmithKline as a senior Commercial leader working at the UK, European and Global level.

After Oxford he joined Unilever as a trainee and became a classically trained marketer working in food and personal products.

He has been on the Committee of The Wine Society, the world’s oldest wine ‘mutual’, for over twenty years, and was on the Board of London & Partners, the Mayor of London’s promotional agency for the city, through the Olympics in 2012.

Follicular Lymphoma Foundation

Our team

Kate Rogers joins from her previous role at GSK plc as Global Finance Transformation Lead at GSK. She also continues to serves as Non-Executive Director and Audit Committee Chair for Ixico Plc, a Medical Imaging company for Biopharmaceutical clinical research.

Previous to leading the recent transformation, Kate was CFO for Laboratoire Glaxo SmithKline SaS (GSK France) and has held senior finance, business transformation and leadership roles in GSK over a period of 20 years. Kate has a degree in Engineering Science from Oxford University and is a Chartered Management Accountant. After graduating from Oxford, Kate joined Unilever as a management trainee, where she developed her early career in commercial finance and change management. From Unilever, Kate joined the pharmaceutical and life sciences industry, and has a deep belief and passion for enabling scientific advances to improve human health.

Kate Rogers said “I am excited finally to join the FLF and am looking forward to making a difference in this disease, driving our ambitions and finding routes for transformative change in scientific research. I’ll be working tirelessly with the teams to progress the search for better treatments and secure a cure for FL patients, and I can’t wait to get started”
The FLF is dedicated to improving lives for the thousands living with FL today and for everyone who is diagnosed tomorrow.

Dr Smith earned his Medical Degree and PhD at Case Western Reserve University School of Medicine, Cleveland, OH. He completed an internship in Internal Medicine at the Long Island Jewish Hospital, NY, spent 3 years as a Resident in Pathology at Washington University – Barnes Hospital, in St. Louis, MO, then another year as a Resident in Internal Medicine at the Jewish Hospital of St. Louis, MO. His Fellowship in Medical Oncology was at Memorial Sloan-Kettering Cancer Centre, NY where he also was a Fellow in Biomedical Research in the Clinical Scholars Program. He is Board-certified in Internal Medicine, Haematology and Medical Oncology.

Dr Smith’s experience is broad and spans a number of years. After serving as Assistant Professor in Medical Oncology at Wayne State University in Detroit, MI, he joined Fox Chase Cancer Centre in 1993, where he remained as Director of the Lymphoma Program and Professor of Medicine until 2012. He served as the Director of the Lymphoid Malignancy Program at the Cleveland Clinic, Cleveland, OH from 2012 to 2017, when he joined the GW Cancer Centre in Washington DC as Associate Cancer Centre Director for Clinical Investigations, as well as Chief of the Division of Oncology & Blood Disorders. His clinical and laboratory interests have focused on targeted approaches to improve therapy of lymphoid malignancies. He has been involved in numerous clinical trials of targeted therapies, including CART cells, in lymphoma, leukaemia and myeloma.

Dr Smith’s honours include a lifetime achievement award from the Delaware chapter of the LLS. He is an active member of the ASCO, AACR, ASH and ECOG. He has served on the NCCN lymphoma and myeloma guideline committees and chaired the Mantle Cell Lymphoma subcommittee of the NCTN lymphoma planning committee.

Having worked across large-scale complex business transformations for over 20 years,Yvette has successfully delivered more than 30 projects and programmes for organisations in the telecoms & technology, banking, public sector, and pharmaceutical industry – including brands such as BT, InterContinental, Bayer, AstraZeneca, BP, News International, Photobox/Moonpig, Transport for London (TfL), Department of Health, NHS and HMRC. Prior to joining the FLF, she successfully led the global corporate finance transformation for Glaxo SmithKline.

Yvette has a Masters in European Business (MEB), holds multiple qualifications in project/programme management and is also a trained life coach.

Key areas of focus at FLF will be to drive transformation, scaling-up the operation, ensuring the correct capabilities, processes, and systems in place to embark on the journey to build the FLF registry and biobank, aligned with targeted accelerated research projects to find a cure for follicular lymphoma.

Transforming businesses for more than 20 years, most recently Glaxo SmithKline, Hetal joins FLF with a clear focus to drive forward the successful delivery of the Precision Medical Programme.

Previously Hetal has worked across, several multinational and public sector organisations, for example, with the Department for Transport and the UK motor industry to accelerate the early adoption of electric vehicles. Initially working at Deloitte Consulting, she was then appointed as the Director of Colindale Communities Trust, a charity set up as part of a local regeneration to improve the quality of life for people in deprived areas of the country. Hetal holds a MEng in Mechanical and Manufacturing Engineering (from UMIST).

Hetal also serves as a Trustee for the Harrow MS therapy Centre and acts as a mentor in the REACH mentoring programme for people in the civil service with either a mental health or physical disability.

Julie previously worked as a Senior Research Fellow at University College London (UCL), where she conducted sexual health research and obtained a PhD in HIV epidemiology.

In her last role she gained experience in grant development, large multi-centre clinical trials, individual participant data meta-analysis and linking with industry. Julie has a particular interest in Patient and Public Involvement in research and believes it is crucial to incorporate patient’s views and experiences into the research process. She assisted in the set-up of Katie’s Team, a patient and public involvement group for women’s health in East London.

Julie has joined the FLF Team to set-up the FLF’s research programme of work and leads on all the operational aspects of the foundation. She is advising on the structure of each programme area, establishing standard operating procedures and reporting metrics and supporting the development of new partnerships and is directly responsible for the FL Patient Recruitment and Engagement.

Zoe’s background is in laboratory-based translational biomedical research, having previously worked at Boehringer Ingelheim in Vienna, Austria, the Cambridge Institute of Cancer Research UK and at the Centre for Cell Biology and Cutaneous Research Queen Mary University of London, as part of her PhD studies.

More recently, Zoe has worked for several years as a senior trials co-ordinator at the Centre for Women’s Health at Queen Mary University of London. In her last role, Zoe was closely involved with Katie’s Team (a women’s health patient and public involvement advisory group based in East London), ensuring women’s voices were represented in the research being carried out.

Zoe has joined the FLF team to support the development of the FLF research programme.

Jonathan’s role within the organisation is to lead the our marketing efforts to establish a best-in-class approach, activity and behaviours, delivering impactful digital and CRM marketing activity, driving donor and patient engagement. He is passionate around helping purpose-led organisations achieved their marketing and business aims, believing in integrated marketing driven by performance and customer-centricity.

Bringing over 30 years experience across integrated marketing, he has led marketing functions and driven business change across a number of industry sectors including; retail (Sainsbury’s), telco (Vodafone), insurance (MORE TH>N, Aviva, AA) and financial services (Zurich) with the last 8 years being spent in two technology-led start-ups (HUGHUB and Gobsmack) and continues to run Beachside Marketing consultancy.

He is passionate and engaging leader and have a proven track record of success in large companies and nimble start-ups; where he has delivered impactful, creative and award winning activity encompassing CRM, e-commerce, social direct marketing, advertising, brand stewardship, data and analytics.

Jonathan is a member of the Marketing Society and is a Fellow of the IDM.

Tom joins the FLF from Cambridge University, where he worked as the Senior Associate Director leading the University’s cancer philanthropy. This included being responsible for a £50m capital campaign, designed to support the new Cambridge Cancer Research Hospital. Prior to Cambridge, Tom worked at King’s College London where he again led the University’s cancer philanthropy programme. He holds an MA from King’s College London in Conflict Resolution in Divided Societies and is also an alumnus of Cardiff University.

Tom will be become the first Director of Fundraising at the FLF and will be responsible for all of the charity’s income streams. Tom brings with him a wealth of fundraising experience, with his particular expertise being in the major gift and principles gift spaces. Tom is passionate about connecting with prospective supporters, listening to their incredible stories and helping to connect them to the work of FLF. Tom’s primary goal will be to help galvanise our fundraising activities, as it is this that will drive the charity’s programmes and allow us to create a new future for patients with follicular lymphoma.

“I feel tremendously privileged to the joining the FLF. Despite the charity only having been founded in 2019 it has achieved so much already, but I am very conscious that this is only the beginning of the journey. As the only charity, worldwide, focussed solely on follicular lymphoma we have an opportunity to truly change outcomes for patients and our ultimate goal is to cure this disease. It is an ambitious vision but with the expertise of our researchers and the energy and commitment of our supporters, I am confident it can be achieved.”

Rosie has joined the FLF team to develop and deliver our Individual Giving Programme, increasing the value and length of support from existing and new donors across a range of activities. Rosie will also be responsible for supporting and engaging with our generous volunteers who are conducting their own fundraising events.

Previously Rosie worked as an Individual Giving Manager at Marie Curie, a large end of the life charity, based in the UK, which has a substantial focus on cancer-based research, policy improvements and caring services. Passionate herself about improving cancer treatments across the world, she is determined to spread the FLF message and ensure the necessary funds are raised to find a cure. With fundraising at the heart of Rosie’s role, she thoroughly appreciates the importance of every FLF supporter and wants to show every donor the incredible difference they’re making.

Fiona has spent her career offering high level operational and administrative services across a variety of corporate and not for profit organisations. She is now at a stage where working towards a common goal that will have a positive impact on people’s health and lifestyle is far more motivating and rewarding than merely seeing an increase in profits.

Passionate about providing excellent customer service to the many enquiries received daily at the FLF, along with supporting the FLF Team in all aspects of admin and finance, Fiona is excited and grateful for the opportunity to work within such an amazing charity, and finds everyone incredibly enthusiastic which is a breath of fresh air. She is sure that she can contribute to the ever-growing profile of this amazing charity in order to help them succeed in their mission to find a cure for FL.

“At last, my natural exuberance for even the most menial of tasks has found a place alongside a fantastically like-minded team. No one minds how excited I get about spreadsheets!”

David has worked across the pharmaceutical industry for three decades and has been advising the FLF since February 2019.

From 2017-2018, David advised Cancer Research UK on re-structuring and implementing change within the Commercial Partnerships division. He also headed up the Opportunity Sourcing and Translation group through formation and recruitment of a team of 15 practitioners. He led on elements of CRUK’s Innovation and Entrepreneurship agenda.

For 4 years previously, David was Senior Advisor within the Corporate Development group at Gilead Sciences. Dr Kennard was also VP, Strategic Alliances YM BioSciences Inc. prior to its acquisition by Gilead Sciences in February 2013. Before joining YM, he was CEO of NeuroTargets, and prior to that he was COO of SR Pharma Plc, a UK-based biotechnology company which developed therapeutic vaccines. He was also with GlaxoSmithKline in development and then strategic planning roles.

Jessica Okosun is an Assistant Professor and Cancer Research UK Clinician Scientist at the Barts Cancer Institute, Queen Mary University of London.

She is a Consultant Haematologist at St Bartholomew’s Hospital, London UK specialising in lymphomas.

Her research interests are focused on understanding how lymphomas initiate, diversify and evolve, particularly follicular lymphoma in a bid to define novel biomarkers and improve treatment. She serves as a member of the UK’s National Cancer Research Institute (NCRI) Low Grade and High Grade Lymphoma subgroups. She also serves on a number of Scientific Advisory Committees. She chairs the Barts Cancer Centre’s Patient and Public Involvement Research Advisory Group. Jessica has been advising the FLF since February 2019.

Steven Labkoff, MD is a clinician-informatician, clinical researcher, and physician executive. Throughout his 30+-year career in clinical and research informatics, he’s worked in a variety of organizations, from large life science companies and NGOs to small start-ups. His career is focused on finding new ways to apply clinical and research informatics techniques to discover and develop new approaches to care and therapies. Steve is currently the Global Head of Clinical and Research Informatics at Quantori, an informatics consultancy company.

Previously, Steve was the Chief Data Officer for the Multiple Myeloma Research Foundation.

In addition, Steve is a fellow at the American College of Medical Informatics (ACMI), the American College of Physicians (ACP), and the American Medical Informatics Association (AMIA).

“One of my goals is to try and connect every FL patient in world so together we can work towards finding a cure. The Follicular Lymphoma Foundation is helping us do this. We can help by raising awareness and funds to allow the FLF to work towards this goal. ”

Nicky Greenhalgh, Founder of Living with Follicular Lymphoma Facebook group