Our Q3 newsletter

Welcome to the latest FLF newsletter

Thank-you so much for your continued support on our mission. We would not be able to make the impact we are, without the generosity of our supporters, from around the world. It’s been an exciting time in the last few months at the Follicular Lymphoma Foundation, and we continue to work hard and make a lot of progress. 

Highlights for Q3 include – our first cycle of the CURE FL Awards programme is progressing strongly, we continue to strengthen our small team, and we are well underway with preparations to attend the global ASH conference (which is the world’s largest haematology conference). More news on CURE FL later in this newsletter. ASH (American Society of Haematology) takes place in December and we’re delighted that we’ll be sharing our flagship programme at the conference in the US.

In this newsletter, we’ll share our latest news and tell you a little more about FL and some of the developments occurring in the medical and science community. We really hope you enjoy the update as much as we did putting it together.

Four fabulous FLF months in… Kate Rogers

We asked our new CEO, Kate Rogers, to share her reflections on joining the FLF, how the first few months have gone and her thoughts about the future. Here is what Kate had to say:

Since joining I have been so impressed by the progress FLF has achieved already, and I’m really excited now to be part of the huge opportunities ahead of us. Having such a clear and focused mission – ‘to find a cure for Follicular Lymphoma and find it fast’ – is truly compelling and galvanising for me and the team, and I feel it also resonates and brings such a deep connection with patients, donors, scientists and our other supporters.

The last 18 months have been such a pivotal period for our young charity – in which our fundraising took off and enabled us to build on our foundations and make real progress in our core research programmes.  I could not be prouder to join the FLF at such an exciting time in our development. Thank you to everyone who supported our fundraising campaigns in 2021 and so far in 2022, for making them such a success and for helping us progress towards our vital goals.  

Our ambition is to break norms and work differently, both in programme design and continually keeping the patient at the heart of everything we do. Every day we strive for breakthroughs, look for ‘the art of the possible’ and push established boundaries – this really is the spirit of the FLF.  

Our biggest focus, and opportunity, is to accelerate transformation in scientific research: to bring new knowledge into the clinic, to lead to better treatments and eventually cures for FL patients, and to ensure the science has the patient at its heart.  

We will do this through our range of targeted and accelerated research plans. FLF’s CURE FL Awards, launched in February this year, will direct impactful funding to areas of scientific need, focused on FL therapies, and aligned with FL patients’ interests. The global response to our prospectus has been excellent, and we intend to confirm successful awardees in Q4 2022.

The science of FL is moving forward at a pace, and it is increasingly clear that treatments should be tailored to patient profiles. During 2021 we developed our strategy to design and create a flagship Precision Medicine Programme (PMP) – building out an unprecedented depth in FL patient data and fuelling focused acceleration in research and clinical development. Our vision and expectation are that this will create a vast improvement in data and insights on the disease for doctors, researchers, and patients.

There is so much going on at the FLF, four months into the role, I feel truly honoured to be leading the FLF, and at such an exciting time for Follicular Lymphoma. As we progress further in 2022, the team and I will continue to work tirelessly to progress our search for better treatments, so that curing this disease for many patients becomes a tangible reality.  

As we approach the end of this year, I’d also like to say a big thank you again to all our supporters and partners, who have contributed in so many ways to the FLF. We could not do any of this without you.

CURE FL Awards – the latest news!

Our mission at the FLF is to lead new and determined efforts to find innovative treatments and cures for FL. In pursuit of this, the CURE FL Awards seek to catalyse scientific research for FL. 

By focussing on high-impact projects, this research grant programme supports a clear path to clinical trial and the hope of clear benefit and impact to FL patients. We are now only weeks away from formally announcing the successful recipients of our research grants and their exciting research projects.

This is a unique programme for the FLF, a catalyst for scientific research to lead to better treatments and cures. We hope to have leading investigative teams making strong progress and quickly towards trials, and for successful outcomes to be available to patients as soon as possible.

FLF worked closely with our partners the Centre for Strategic Philanthropy (CSP) at the Milken Institute, to develop this research grant programme. Its aim is to support innovative and impactful FL research with targeted funding.

FL as a condition is often put in the “back seat” in research compared to other forms of lymphomas and blood cancers, and the CURE FL Awards are specifically designed to change that to give an impactful voice to the FL community, to highlight that for patients living with FL, this is not a ‘good cancer’, and should not be overlooked. This work is shining a light on FL, to catalyse the focused development of therapies for FL patients.

The CURE FL Awards are a call for transformative projects in areas of treatment that we have identified as being the most likely to deliver rapid progress towards a cure – and then made available to patients as soon as possible.

We will be looking to announce the successful investigators of the first set of CURE FL Awards in Q3 2022. These grantees will be powering some very exciting scientific research projects, which seek to accelerate the development of new and better treatments and a cure for FL.

Through the CURE FL Awards, we will be providing four research grants of up to $500k each (a total of up to $2m over the next two years) to support targeted and innovative research projects into FL, each offering a clear path to clinical trial and the hope of clear benefit and impact, to FL patients. These represent our first significant step in the journey to deliver our mission to find a cure and find it fast.

From the start, we wanted to direct funding to scientific areas of FL need, with patient interests fully in mind, and able to accelerate the path to clinic. Through the CURE FL Awards, we link research and clinical communities with patients. Our selected awardees have been chosen with the input and support of a wide range of experts in the global FL field, together with patients to ensure their views and experiences are part of the development process for new treatments.

By delivering the world’s first evaluation of what are the most likely effective therapeutics and mechanisms in FL research that can be brought to market in the shortest period of time. This highlighted immunotherapy, CAR-T and targeted therapies as our big priority areas. Then we invited proposals aligned to these priorities, for pre-clinical or clinical research – either as stand-alone treatments or in combination with other treatments for FL. With a panel of experts, we reviewed all the entries and identified a set of really high-quality proposals. These each offer the opportunity to accelerate a clear path to clinical trials, with potentially very positive impact and benefits to patients with FL.

FL has rarely previously been a central focus for drug development, and we want to change this. With this programme, we are putting FL front and centre in Lymphoma research, and catalysing development of therapies for the underserved FL patient populations. By awarding $2 million of funding over the next two years, we are moving one step closer to finding better treatments and a cure for FL.

We hope knowledge gained during these 2-year studies will lead to clinical trials of new CAR-T cell treatments – or combinations – that will provide hope and opportunity to patients, and give clinicians knowledge of why certain treatments do and do not work in certain patients.

‘For patients with FL, I want to emphasise that each project aims to have a clinical trial available for patients, or be in late-stage planning, by the end of the funding period. This demonstrates our commitment to getting new treatments to patients as quickly as possible.’

Dr. Mitchell Smith – CMO at the FLF

‘The CURE FL Awards mean real progress towards a cure. In speaking on behalf of our members, we feel supported – it helps us to worry less and look forward to a positive future. Wheels are in motion to find cures for us all, so thank you.’

Nicky Greenhalgh – Founder of the Living with Follicular Lymphoma community and Patient Representative on review panel

We hope to be able to confirm more of the details around the successful proposals later in the year and share progress ongoing with future editions of the newsletter.

Our global FL community

In the development of the FLF, we had a fundamental principle that we hold close to us every day: to keep the patient at the heart of everything we do. We speak regularly with patients to understand key needs and concerns and help the delivery of our programmes.

The Foundation links research and clinical communities together with patients, to help ensure their views and experiences are part of the development process for new treatments.

Nicky Greenhalgh and the patient representatives from the independent ‘Living with Follicular Lymphoma’ patient Facebook group (currently nearly 10,000 members globally) provide us with invaluable insights. This is done through both the wider community and through the FLF Super Supporters group (15-20 patients dedicated to contributing towards our work). We’re deeply grateful for all the valuable support we receive from the FL patient community.

We asked Nicky to share the background of the group and share a little more about the purpose and how it helps its community.

A little more around the Living with Follicular Lymphoma support community – from Nicky Greenhalgh

I started the group in December 2015, almost 2 years after my diagnosis in February 2014. I was struggling to come to terms with my diagnosis and knew meeting others with FL would help me. I searched but couldn’t find any connections in general lymphoma groups. I felt FL was different to many others because we were living with the incurable factor, as well as watching and waiting. I knew there was lifestyle differences I could make, and I wanted to talk to others about that as well. So, I started ‘Living with Follicular Lymphoma’ (LWFL) and immediately made instant connections. Some of the earliest members I’m still good friends with today.

To be a safe space for FL patients to share their feelings and questions about their diagnosis and have instant support, education, and reassurance.

In so many ways:

  • It can help relieve the instant fear and doom feeling at the initial diagnosis.
  • It’s a place to go with any questions relating to FL treatment, such as signs and symptoms.
  • An opportunity to meet other FL patients in their area and connect across the globe.
  • For support and to find out or offer up further information around FL.

There are a huge range of conversations going on within the community, these include: lifestyle strategies – rebounding, supplement intake; new members telling their story and asking questions of what to expect; remission celebrations.

A really interesting example is how we managed through COVID-19. We all discussed our fear in the beginning, some shared their journey with COVID-19 and helped relieve some fear around that. We allowed discussions of the vaccines and we even discussed antibodies! The group were keen to understand how people felt on different topics, so we ran polls and even surveys. We also established community guidelines around vaccine discussions and were very clear. We were able to have more open discussions than many other groups who simply banned any discussion of vaccines.

I like to think that members of the ‘Living with Follicular Lymphoma’ Facebook group are the inspiration and driving force behind the FLF. We work together in many areas and support each other in our goals.

I didn’t have the type of support that the group provides when I was initially diagnosed, I was scared every day of the unknown. I didn’t know anyone else with FL for the first 2 years and it was having a devastating effect on my mental health and my family were also noticing this, especially my kids. I wouldn’t want anyone else to experience this if I can help it. That’s why I want to connect every single FL patient in the world so we can all come together to support and educate each other on everything FL, so we can be prepared and not scared anymore.

“Whilst the FLF could be said to represent the brains and dedication behind finding a cure for FL, the LWFL Facebook group represents the beating heart and passion behind this mission. This symbiotic relationship combines the scientific rigour of a professional organisation with the insight of lived experience – working together gives us the best possible chance of a cure”

Paul C. Mollitt (Living with Follicular Lymphoma moderator)

Our CMO update

Clinical trials latest. By Dr Mitchell Smith

There continues to be a range of developments occurring in the FL arena at present, therefore I wanted to share some of the particularly promising ones as well as highlight some of the updates from the clinical trials that are currently happening.

Excitement continues to build as evidence accumulates for the benefit of using T-cells to treat FL, either modified CAR-T cells or bispecific antibodies that use your own T cells. These have typically been as secondary or later treatment options, and many interesting combination trials of bispecific antibodies are underway with more planned. Bispecific antibodies are already being tested in clinical trials to see if they may have a role in initial therapy as well.

Another area of progress is longer follow-up of two important studies, testing options for initial therapy of FL. The relevance trial reported a six-year follow-up, confirming that lenalidomide-rituximab (commonly known as R2) and chemotherapy-rituximab provide similar benefit with different side effect profiles. So, if you are in a country where R2 is available, the choice may come down to a discussion of side effects.

The GALLIUM trial comparing rituximab or obinutuzumab as the anti-CD20 antibody, to be combined with chemotherapy, followed by maintenance with that antibody, also continues to show that the disease stays away longer with obinutuzumab, but with more side effects and no difference in overall survival. So, again, either treatment can be a good option to be discussed with your doctor to select what is best in your case.

I look forward to providing further updates in the New Year and our insights from the upcoming ASH (American Society for Hematology) Annual Meeting taking place in December 2022.

Research in focus

Bispecific antibodies approval. By Dr. Zoe Drymoussi 

Over the last few years, a promising new class of treatments for advanced stage FL has been in development, with mosunetuzumab being the first in this class to be approved in Europe (by the EMA; European Medicines Agency) and likely to receive U.S. FDA (Federal Drug Administration) approval by the end of 2022. We are talking about a type of immunotherapy: bispecific antibody treatment. Antibodies such as rituximab, important lymphoma treatments, have one target which is on lymphoma B-cells. Bispecific antibodies have two targets, one on the B-cell but also one on T-cells – this brings the lymphoma B-cells in close contact with the immune system’s T-cells which are designed to kill.

There is a lot of promise around this class of therapies as they may be more broadly available, more easily administered, and with more manageable side-effects compared to CAR-T, which is another method of using the immune system to kill lymphoma cells.

Unlike CAR-T, which require a complex process in which the patient’s own cells are grown and reprogrammed in the lab before being re-introduced into the body, bispecific antibodies are “off-the-shelf” therapies. This makes them easier to administer – the hope is that in the near future patients receiving bispecific antibody treatment can be managed in community clinics, rather than need to attend larger central hospitals.

The bispecific antibody treatments in late-stage development all target CD3 (a T-cell marker) and CD20 (a B-cell marker), including mosunetuzumab, glofitamab, and epcoritamab. Trials are underway looking at these agents alone or in combination with chemotherapy, rituximab, and other new and established FL therapies. There are some early phase trials also looking at using bispecific antibodies in previously untreated FL patients (as a 1st line therapy).

In the news

FLF are attending the ASH 2022 Annual Meeting.

We are delighted that some of our team are delighted to be able to attend the 64th ASH Annual Meeting and Exposition, in New Orleans Louisiana, USA from the 10th to the 13th December 2022.

The FLF team will be attending sessions, building relationships, and most importantly sharing our latest updates about the CURE FL Awards and the Precision Medicine Programme (PMP). We will be participating in the sessions and engaging with the very best academics, researchers, clinicians, and scientists – building relationships and fostering potential collaborations in the future, to help us achieve our mission.

The American Society for Haematology (ASH) is the largest professional society serving both clinicians and scientists around the world, who are working to conquer blood diseases. There are over 18,000 members of ASH, from nearly 100 countries worldwide. Their mission is to foster high-quality transformative research and innovative education to improve the lives of patients with blood and bone marrow disorders.

The ASH annual meeting is the world’s most comprehensive haematology event of the year and provides an invaluable educational experience and an opportunity to review the latest developments and topics in haematology – including lymphoma. It is our opportunity to share our mission and the progress we are making across all our programmes with leading researchers, clinicians and other experts. The ASH conference brings over 30,000 attendees to its host city each year.

We will update you on our insights, and any important announcements in our next newsletter in early 2023.

‘Attending the ASH event is such a wonderful opportunity to be in and around the leaders in the haematology field. This offers us the opportunity to the see the latest insights, most recent developments in both clinical research and technology.’

Dr Zoe Drymoussi (Research Manager at the FLF)

Recent patient stories

We always like sharing stories from FL patients around the world. This time it is Stephen and Gillian who share their experience of their diagnosis and their story since.

Stephen Mann

Tell us a little more about yourself:

I am Stephen Mann, a 59-year-old single father of three adult children. I work for an IT service provider in Perth, Western Australia, and in broad terms have enjoyed reasonably good health most of my life.

When did you find out you were diagnosed with FL?

1st of April 2016 (disappointingly it wasn’t a bad April fool’s joke).

When I was first diagnosed, it was believed I had a tumour in my left armpit and also in my freshly removed tonsils. I was declared as being stage two and had commenced watch and wait with blood tests and catch up with my hematologist every three months. In September 2016, I had a bone marrow biopsy taken to be used in a benchmark prior to commencing chemo later in the year. This was due to further lymphoma-related tonsil issues impacting my sleeping/breathing. The bone marrow biopsy showed high lymphoma involvement and I commenced treatment early in October 2016. I had five rounds of B+R (Bendamustine and Rituximab) and concluded treatment on 31st of January 2017. A subsequent PET scan showed a great response, and I was more or less declared as having no evidence of the disease.

I have been having regular blood tests and catch ups with my hematologist and so far, all is going well. Still no relapse. Impact upon my life in general terms has been minor since then, other than the spectre of it eventually relapsing at some stage in the future.

I’m lucky I have excellent support from my children and friends. In Perth, we have a great group of Follicular Lymphoma buddies. We organise regular get-togethers, which makes a wonderful difference in how we all deal with this.

Gillian Coulter

Tell us a little more about yourself:

Sure! I am Gillian Coulter, I’ve lived in Washington, DC, going on 27 years, and am married with 2 cats! I’m an event planner for a New York-based restaurant just one block from the White House.

When did you find out you were diagnosed with FL?

After discovering a small lump on my clavicle in January of 2019, and 11 long months of testing for everything under the sun, because you are far too young to have lymphoma, I was officially diagnosed in November of 2019. This was after an excisional biopsy showing Non-Hodgkin’s B-Cell Follicular Lymphoma at the age of 46. I was put on watch and wait until June of 2020 when I began R2. I officially relapsed in July of 2022 and began B&O in the September just gone.

As you can imagine, coming up with this diagnosis and hearing the ‘C’ word, was a shock and a total life shift. And going through treatment twice during a pandemic has been quite the adventure. For me, it represents a lot of lost opportunities and isolation, but the amount of tears have been matched with an equal amount of laughter and unwavering strength.

For all the ups and downs, I think the brightest spot has been the network of other lymphoma survivors, Hodgkin’s and Non, including finding a lifeline on Living with Follicular Lymphoma group. Upon discovering the group on Facebook – I was connected not only with someone who shared my oncologist, but lived in the same neighbourhood as me, and had completed the same protocol six months before me. Jay became a fast friend and got me out of the house every Sunday for ‘urban hikes’ through Washington, DC, and kept me going through what ended up being a very arduous treatment. He’s since moved to Portugal, but we still stay in touch! (Picture attached is of us at our last appointments together before he moved!)

Focus on fundraising

We are always so grateful when it comes to the amazing generosity of our donors. The support is so critical for us, and our work only happens because of it. Fundraising remains a key focus for us at the FLF, and there is a lot going on in this area, but also with our supporters. We wanted to take a moment to share some of latest news from within the FLF and celebrate a couple of fundraisers from the last few months.

Meet our new Director of Fundraising – Tom Keil

We are delighted to welcome Tom to our new fundraising team. He brings with him a wealth of fundraising experience from Save the Children, the University of Cambridge and King’s College, London. Tom’s primary goal will be to help galvanise our fundraising activities as this will ensure we can continue to drive our programmes and allow us to create a new future for patients with Follicular Lymphoma.

‘I feel tremendously privileged to have joined the FLF. We have 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.’

Tom Keil (Director of Fundraising at the FLF)

Fundraising heroes

The Snowdown Colliery Welfare Brass Band

The wonderful Snowdown Colliery Welfare Brass Band recently (October 8th) created a fabulous afternoon of music for the local community of Dover, Kent. The band played music chosen by one of the band members who has been diagnosed with FL and is currently in remission. The band aimed to raise funds for FLF and also to say a big thank-you for the treatment received by their band member.

Over the day the band raised over £1,300 (well surpassing their target) – a truly amazing achievement! We would like to say a massive thank you to the band and their local community for their generosity.

Henry and Esther’s Golden Wedding Anniversary

Henry and Esther Shirman, two supporters that have been with the FLF since day one, recently celebrated their 50th wedding anniversary, and they certainly did so in style!

Fifty years on, they decided to recreate a special photo from their wedding day – with Esther even wearing her actual wedding dress.

With the pair dressed to the nines, they kindly asked friends and family to a party and to donate gifts to the foundation in their honour. We couldn’t be more grateful as the happy couple managed to raise over £1,000! Thank you to everyone who donated.

Thinking about fundraising for the FLF?

If you are interested in supporting our cause and are wondering how you could go about it, please visit www.theflf.org/fundraising for a range of ideas. We are always keen to support our wonderful fundraisers so please let us know what you are planning, you can send us an email at info@theflf.org or visit www.theflf.org/connect.

Got a FL question you would like answered? Let us know.

We are always interested to hear any thoughts or questions you may have about Follicular Lymphoma and would be delighted to receive them, whether that may be around diagnosis or treatments. We will endeavour to answer any that come in and, where appropriate, look to feature these topics within our information of advice content or within our FAQs.

Simply visit our website and send us a note, we read every enquiry and endeavour to respond within a couple of days. Or alternatively, reach us on one of our social channels – we are on Facebook, Instagram, Twitter and LinkedIn.

Warmest regards,