A top Facebook executive who was diagnosed with incurable blood cancer in 2016 has launched a new charity which hopes to raise £15 million and find a cure for the disease within 10 years.
Nicola Mendelsohn, Facebook’s vice president for Europe, Middle East and Africa, launched the Follicular Lymphoma Foundation to fund vital research in a bid to find a cure for the incurable.
Three years after being diagnosed with the rare blood cancer, Ms Mendelsohn met with London-based residents living with the disease to mark the launch of her charity on Monday.
Follicular lymphoma affects nearly 2,000 people in the UK each year, and around 20 per cent of those have a particularly acute form of follicular lymphoma with a poor prognosis.
Within the next three years, the foundation hopes to raise $20 million (£15.5m) to fund research, raise awareness, help patients establish support networks and ultimately find a cure.
“This is the beginning of a journey,” Ms Mendelsohn, who was named in 2019’s Evening Standard’s Progress 1000 list, said. “We want to move from bench to bedside as quickly as possible.
“The main aims of the charity are to help people who have follicular lymphoma live well with it and get well from it, and that the charity should not have to exist as soon as possible.”
By the end of the campaign, the charity wants 100 million people from around the world to be aware of the rare disease, with Ms Mendelsohn saying: “Awareness is so crucial.”
“Follicular lymphoma is not even that well known in the medical community,” the mum-of-four from London told the Standard.
“If you want to change the natural course of a disease, you have to have awareness of it."
She added: “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.”
Ms Mendelsohn is co-admin of the Living with Follicular Lymphoma Facebook group and on Sunday she, alongside the group’s founder Nicky Greenhalgh, met up with London residents living with the disease.
Ms Greenhalg set up the group two years after being diagnosed in 2014, and has seen it grow from a network of a few people to a group of more than 6,000 people from 100 countries.
Speaking to the Standard after the members’ meeting in King’s Cross, Ms Greenhalg said that the worst part of her experience with follicular lymphoma was after she had finished treatment.
“It was unbearable,” mum-of-two Ms Greenhalg, from Mandurah in Australia, said of her diagnosis at 32. “I was trying to deal with the mental anguish after being told my prognosis was 10 years.”
On the inspiration behind the Facebook group, she said: “I was going day-to-day very teary. Then one day I was going through my daughter’s school bags and I found a letter she wrote to Father Christmas, her wish was for mummy to be happy every day – it made me realised how much it was affecting my kids.
“I knew I needed to do something and the only thing that makes sense is finding people who are going through the same mental anguish I am. There were no Facebook groups for it at the time.
“Having that support network, straight away I felt better, I wish I had it when I was first diagnosed.”
Speaking about the charity launch, she added: “I’m so excited to see how the launch of the Follicular Lymphoma Foundation will energise our community and help them feel seen.”
Dr Jessica Okosun, clinical senior lecturer at Barts Cancer Institute and Consultant Haematologist at St Bartholomew's Hospital and Scientific Advisor to the Foundation added: “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.
“So the launch of the Follicular Lymphoma Foundation – with its aim of funding new research, particularly at a time when technological advancements are at its most exciting – is very welcome.
“As this is a disease which affects thousands each year, many of who have to live with the anxieties and uncertainties that come with an incurable disease, I look forward to being a part of the next phase in accelerating progress towards improving patients’ outcomes and finding a cure.”