Changemaker Profile

Lucinda and Nola

Nola started to have seizures just before she was three months old. We took Nola to A&E but after checking her over we were turned away as Nola was seen as well. Investigations began and after an MRI scan, benign tumours (called tubers) were discovered in Nola’s brain. The probable diagnosis was tuberous sclerosis.

Receiving Nola’s diagnosis was a really difficult time, as you don’t expect your child to be diagnosed with a rare condition. It was also a very lonely time. When we were discharged with that probable diagnosis we were not told any information about tuberous sclerosis; we were unsure how this was going to impact our lives.

It would be brilliant if there was more awareness of rare diseases and an increase in public understanding. I used to be one of those people; I was unaware. However, when you experience things for yourself, it gives a difference perceptive on life and how people with lifelong conditions face multiple hurdles.

Launch Art Exhibition

I am number 17 launched in January 2020 with an art exhibition at the Oxo Gallery, showcasing each changemakers experience. Each changemaker was paired with an artist to create a bespoke piece of artwork, ranging from paintings, photography to physical installation. Below you will find information on the artwork created and the artists profile.


When I spoke to Lucinda about Nola’s experience with tuberous sclerosis and the fact that its often linked to waves because of the ups and the downs. Lucinda has a saying ‘there’ll be waves but I’ll hold your hand and we’ll ride them together’. Lucinda often pats Nola, and holds her when she needs settling. The power of touch, and bond between mother and daughter, led me to create something tactile that people can feel.

Artist Profile

Jess Warby

Jess lives and works in Peckham. Her work uses a variety of different mediums all mostly involving textiles. Jess doesn’t like to be limited to one way of working and likes to teach herself how to use different machinery to incorporate into her work. It is important to Jess that she creates everything herself by learning the process behind it and is often doing these two things simultaneously. This lends itself to Jess’ style as she embraces mistakes and quirks within the pieces. Jess likes her designs to be figurative and include text to inform the viewer and be accessible to all ages and walks of life.


This campaign isn’t just about us – it’s about you. If you live with, or care for someone with a rare disease, share your experience on social media using the hashtag. Help us be heard.

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