TBN Spotlight: Sarah Moore, Lily Foundation

Sarah Moore is the Corporate Fundraiser over at The Lily Foundation; their vision is for a world in which every mitochondrial disease patient has a voice and access to treatment, support to improve their life and, ultimately, a cure. We caught up with Sarah to hear more about her important work and The Lily Foundation in this feature on TBN Spotlight.

Tell us a little bit about your business

The Lily Foundation’s vision is for a world in which every mitochondrial disease patient has a voice and access to treatment, support to improve their life and ultimately a cure. By raising awareness, tomorrow unlocking the cure through pioneering research and forever supporting the mito community to make a difference.

What are some of the most popular services that you provide?

We support over 1200 families through our Lily Wish Fund which is a grant scheme designed to give mitochondrial disease sufferers and their families access to something they might not normally be able to afford to improve their lives.

The Lily Exome Sequencing Project allowed scientists to test hundreds of genes at the same time. It was the first UK-wide project of its kind for a rare disease and is one of our proudest achievements as a charity to date, enabling a diagnosis for over 70% of families who were tested. The programme was so successful it’s now been taken up by the NHS – something we’re hugely proud of.

Has there been a particular business highlight this year?

The Lily Family Support Weekend is an annual event which takes place at The Chesford Grange Hotel in Warwick in June or July. This event is designed especially for families affected by mitochondrial disease. Their child may have received a diagnosis for the condition, or have suspected mito but no confirmed diagnosis or they may have lost a child or children to the disease. This year was its biggest yet with over 360 people (81 families) attending, medical professionals, volunteers and The Lily Team.

A comment from one family attending: “It was an amazing weekend to meet families who understand what we are going through. We learnt so much and also had some much-needed family time”

What do you enjoy most about networking?

I really enjoy meeting and talking to people, building up those valuable relationships which open up new opportunities and ideas. It gives me a stronger support network with increased visibility & impactful connections.

What do you love about working in the geographical area that you work?

I am Bath born and bred and love this area but I am also drawn to Dorset and the coast which brings back amazing childhood holiday memories. I have found people in these areas so welcoming, warm and supportive.

When you’re not busy working, what do you like to do in your spare time?

We have two dogs, one is only 9 months old so still a puppy who keeps us busy with many walks. We visit our son who lives in Dorset as much as possible and love the boating life in Poole Harbour. Meeting up with special friends is always a must too!

A friend pilots a hot air balloon so I hop on board whenever there is a spare place.

What are your favourite places to visit locally?

Sandbanks whilst in Dorset and the fantastic array of Restaurants in the surrounding area. Whilst at home in Bath I enjoy frequenting the amazing farm shops and their cafes, Newton Farm Shop in Newton-St-Loe is top of the list.

Tell us any other interesting facts about you that you think people would like to know…

We have lost two daughters to mitochondrial disease, Harriet was aged 18 months and Kimberley aged 4 years. Working for this charity now has a special meaning and connection for me.

I appeared on Deal or No Deal in 2007 and won £12,500….I Spanked the Banker.

I worked at Bath Rugby for over 12 years within their Commercial/Hospitality Dept and did a sky dive in 2018 raising over £20k for The Lily Foundation.

You can find out more about The Lily Foundation, here.