Who We Are

Desmoid Aid is a non-profit charity set up in 2024 to provide factual information about Desmoid Fibromatosis tumours and small one-off grants for people that have been diagnosed with Desmoid Fibromatosis tumours to help with any unexpected costs.

Providing useful information and support to the Desmoid Fibromatosis community is very important to us. We fact check all our information and use a person advocacy group made up of Desmoid Fibromatosis people.

We keep our costs to a bare minimum. All of the trustee roles and advisory roles are voluntary which means that we can focus on the money being raised going primarily to people who need it.

The charity was founded by Jacqui Black following her husband being diagnosed with a Desmoid Fibromatosis Tumour. This is what she said:

“My husband was diagnosed with a Desmoid Fibromatosis tumour in 2022 which was growing rapidly and interfering with his digestion.

The whole diagnosis process was traumatic and as the disease is so rare it took a long time to get a diagnosis. We felt like we were going round the houses sometimes. My husband was unable to work for a year which had a huge impact financially and emotionally. During this time we discovered that he did not qualify for a lot of grants that say people with cancer would qualify for, even though he had an operation and 6 months of chemotherapy. As the disease is not classified as cancer things like insurance and mortgage policies did not recognise it either.

I was struck by how it felt as though we had slipped through a crack in the pavement and I wanted to do something to help support people that were diagnosed in the future as it can be a scary, lonely journey. And hence, Desmoid Aid UK was born. We are a small charity, but a big step to help support people with this disease.”

The charity is run by a group of enthusiastic and passionate people that come together to make a difference, bringing with them a broad range of experiences and skills.

Jacqui Black

Jacqui conceived the idea for the charity following the diagnosis of her husband with a tumour.

Jacqui is a registered, qualified Osteopath and has been working in healthcare for the past 16 years running her own Osteopathy clinic and teaching Access students anatomy.

Prior to this Jacqui worked in retail management for many years developing project management skills.

Her passions outside work include keeping fit, playing tennis and looking after her cats and dogs.

Julie Langley

Julie comes to Desmoid Aid UK with a wealth of knowledge in finance and business development.

Julie has extensive experience in building teams, processes, and compliance delivering finance and integration projects for organisations, including the Richemont Group and Boden. She is passionate about applying her skills at Desmoid Aid UK to support people living with Desmoid tumours.

Julie enjoys travelling, exploring new cultures and spending time outdoors.

Rosemary Sloman

Rosemary trained as a teacher and worked in the education sector for 30 years.

That experience included working with The Cardiac Unit at Kings Hospital, London teaching and supporting people (and their families) with chronic heart conditions to adapt to life post surgery.

Rosemary has previously served as a trustee of a Charity which supported young adults with learning disabilities to lead independent social lives.

Rosemary has a close friend who has been diagnosed with Desmoid tumour and has a full understanding of the disease, its treatment and the potential consequences of living with a tumour post treatment.

Sam Hackett

Sam is a specialist nurse that works for the charity Sarcoma UK.

Sam set up Sarcoma UK Support line and has been part of the support service for people with sarcoma and desmoid tumours for the last 8 years. Previously she has worked with people with desmoid tumours for 17 years at the Royal Marsden Hospital.

Sam is passionate that all people with desmoid tumours and their families have access to a specialist sarcoma service and a team that can support them through the best option for them.

Sam has recently been part of the international consensus group for desmoid tumours and was a specialist advisor for NICE standard for improving care for sarcoma people.

Sam is often found out cycling or walking in Somerset and West Dorset. Other passions include baking and Arsenal!

Anna Worthington

Anna has spent the last 20 years in C Suite leadership and Director roles for early stage businesses, specialising in sustainability and wellness focussed consumer goods.

Anna now runs her own brand and product development consultancy, working exclusively with investors committed to making a real difference in sustainable solutions.

Work now takes a very happy second place to spending time with her beloved, and all-consuming Lab cross Spaniel dog!

Anna was struck by the very challenging experience of a very close friend who was ultimately diagnosed with a desmoid tumour.

We have proud partnerships with our advisors at The Royal Marsden Hospital who provide us with guidance on the medical and treatment aspects of Desmoid tumours.

Doctor Andreas Napolitano

Dr. Andrea Napolitano works as a Consultant Medical Oncologist in the Sarcoma Unit of the Royal Marsden NHS Foundation Trust.

He is heavily involved in translational and clinical research of desmoid fibromatosis. He has been sub-investigator and principal investigators in phase I-II-III clinical trials and has co authored more than 70 peer-reviewed articles.

Lucy Dean

Lucy Dean has worked as a physiotherapist for the past 17 years specialising in sarcoma and soft tissue tumours since 2015, she took on the additional role of service lead for sarcoma rehabilitation and lymphoedema in 2020.

Lucy feels passionately about supporting people to live well with desmoid fibromatosis. This inspired her to complete a long-term conditions module during her MSc in Rehabilitation from which she graduated last year. She has helped to raise awareness of desmoid fibromatosis through education opportunities both internal and external to the hospital. Her role includes helping people to optimise their movement and function, as well as supporting people to be physically active. She has co-authored on several research publications relating to desmoid fibromatosis and has worked with the medical team and specialist nurses to improve services based upon the findings.

Outside of work, Lucy enjoys travel, running, coffee and reading.

Grant Application Notice

Who We Are

Jacqui Black

Julie Langley

Rosemary Sloman

Sam Hackett

Anna Worthington

Doctor Andreas Napolitano

Doctor Andreas Napolitano

Lucy Dean

Lucy Dean

Grant Application Notice

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