Nicola Mendelsohn, Facebook’s vice-president of Europe, the Middle East and Africa, has launched a new charity to find a cure for the currently incurable blood cancer she and hundreds of thousands of other people have.
The Follicular Lymphoma Foundation (FLF) is the only charity that is dedicated solely to funding research that finds new treatments and cures for follicular lymphoma, while supporting patients, and their families. It aims to raise $20m (£15.5m) in its first three years and is hoping to find a cure to the disease within the next decade.
“Despite hundreds of thousands of people living with follicular lymphoma it has a very low profile and there has been comparatively very little investment into the disease,” said Mendelsohn in a statement sent to Yahoo Finance UK.
“An average 20-year survival from diagnosis might look good on paper, but I’m in my 40s with a husband and four beautiful children that I want to see grow up. It’s not enough, and I’m not satisfied when we know that the knowledge and technology is available that puts a cure within our grasp.”
In the winter of 2016, Mendelsohn received the devastating news that she had the incurable blood cancer, follicular lymphoma.
In a previous interview with Yahoo Finance UK’s Global Change Agents with Lianna Brinded show, Mendelsohn said “that weekend was without question — because I was a bit in limbo, we didn’t know what it may not have been — the worst weekend of my life.”
“I was able to go about 18 months with it before I needed treatment, which I did last summer, and I had to have chemo and immunotherapy, which is not ... I mean, it was horrific.
She emphasised that not all therapies and cancers are the same and that people can react very differently to treatment. The married mother-of-four praised the support of her family and doctors.
“I was able to work through. I had great support and I was lucky and I had great doctors and now this is part of me. I will continue to be monitored. I feel well. I feel good,” Mendelsohn said.
Late last year, Mendelsohn revealed her cancer had entered remission.
Results in post 6mnths chemo & immunotherapy, I’m in remission! Here’s me on my first & last treatment day. Grateful to the amazing Drs & nurses who helped me through this. Thanks to family & friends & to everyone at work for the love and support that you gave to me. pic.twitter.com/qjrHgrwmv5
— nicola mendelsohn (@nicolamen) December 16, 2018
What is follicular lymphoma
Public awareness of follicular lymphoma isn’t high. The cancer is the most common low-grade non-Hodgkin lymphoma with approximately 2,000 people being diagnosed with the disease each year in the UK alone.
About 20% of those diagnosed have a particularly acute form of follicular lymphoma with a poor prognosis.
For 80%, the disease can mean decades living with a chronic form, facing the anxieties of never knowing when the disease will come back and often a daily battle with challenging symptoms, or the long-term side effects from treatments.
“The amount of research funding into follicular lymphoma has comparatively decreased over time and, despite advances, the medical and research community still don’t understand follicular lymphoma as well as we would like, or well enough to have identified cures for all patients,” said Dr Jessica Okosun, clinical senior lecturer at Barts Cancer Institute and Consultant Haematologist at St Bartholomew's hospital and scientific adviser to the Foundation.
When Mendelsohn was first diagnosed, she spent the next few months researching her condition until she stumbled across the Living with Follicular Lymphoma Facebook group. The closed group now has more than 6,000 members.
She said on Global Change Agents with Lianna Brinded: “They are my best source of advice and inspiration and sounding board when I’m just going ‘has anyone had ... We share deeply personal things with one another because we’re there to help one another.”
Following the launch of the charity, Mendelsohn was keen to point out that, years later, that she’s now a co-admin to the Facebook group and “we have people in their 20s and late teens being diagnosed. For them, being told they might have 20 years to live their lives around ongoing and exhausting treatment is inexcusable.”
Nicky Greenhalgh, co-admin of the Living with Follicular Lymphoma Facebook group added: “Living with a chronic and often invisible condition like follicular lymphoma can feel isolating, and cancer is a terrifying word.
“As this form of blood cancer receives so little attention, when I was diagnosed in 2014 there was little to no information available and certainly no support networks to turn to.”
“When I established the Living with Follicular Lymphoma Facebook group. I was seeking a sense of belonging at a time when I felt very lost and alone. I never expected it to become the community it has.
“I’m so excited to see how the launch of the Follicular Lymphoma Foundation will energise our community and help them feel seen.”
Raising awareness for the ‘invisible’ disease
To raise awareness, the charity launched with support from celebrities, such as singer Katherine Jenkins and actor Tracey Ullman in an advertising campaign by The&Partnership.
It features imagery from one of the most famous photographers in the world — Rankin. His photography is aimed to “make the invisible, visible” by using purple make-up — similar to the dye used to make the disease visible under a microscope — to expose the often invisible disease.
The charity has also created an augmented reality Instagram filter which lets users 'reveal' the lymphatic system on people's faces, depicted in glittering purple, developed by Myreality.design to help raise awareness of follicular lymphoma and drive donations.
“As well as working towards finding critical new treatments and cures for follicular lymphoma the Foundation also aims to raise awareness of this invisible disease and to help people find communities that offer support, like the Living with Follicular Lymphoma Facebook group that Nicola helps run,” said Dr Okosun.